My "helper" is down...!

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wyone

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You are both in our thoughts and prayers. I am a true believer in the power of prayer. I am also a believer in the reason you have Mr Anonymous in your life is because you have done and are doing things that merit that. Good people draw good people.
 
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robutacion

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Update

Hi folks

Has been some weeks so, I though was time to update...!

Merissa is slowly getting better from the movements and pain levels, the weekly blood tests show some improvement and not alarming signs of any negative reaction from the new medications she is on.

Unfortunately, some of the side effects get her pretty sick every so often, all within the possible side effects caused by the medications, discussed by the specialist and within the various possibilities however, I can say that, there are some known side effects from the same medication that are far worse...!

As for myself, and after I was told that my Adrenal glands vein test was " very unusual", the specialist has put me on a very small dose of a new medication, this would be one of the best known drugs to stabilized my excessive production of Aldosterone and bring down the dangerous levels that my blood pressure have been showing for over 2 years.

I just say the specialist a few days ago (monthly visit) and I had a written report from the blood pressure daily readings from my own machine, starting 1 week after I started the new drug (1 week before anything changes) and it show a slight reduction of the average blood pressure so, a good indication that this new drug may be the correct one to control the Aldosterone levels.

As a result, he double the dose and ask me to continue to monitor the blood pressure readings. I was also told that, the "unusual" test results I had, have been presented to a panel of specialists and that, has been agreed that, it seems that my left Adrenal gland is to one causing the problem and therefore, may be subjected to removal/surgery, as soon as possible so, will see...!

In resume, things are improving, that's all I could ask for...!:)

Cheers
George
 

robutacion

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Hi Sharon,

Thank you for kicking my butt for not updating more often, as I know, you have shown a special interest on the situation, of which we both appreciate immensely...!

We all miss you but, we understand that, you have spend much time with your friend, that I haven't heard anything about it, for quite some time so, an update on that situation would also be appreciated...!

Well, I'm starting to have my blood pressure stabilized, after a long 3 years, the "faulty" left Adrenal gland, has been controlled by a combination of medications that, took some effort and trial and error to find something that would actually work and not give too much of nasty side effects.

Like I said, the blood pressure is getting to where it should be but, my diabetes went off the roof so, we are trying to control that also. The specialist is not yet sure if, I should have the faulty Adrenal gland removed or continue with the medication, I'm not certain if this drugs are something that I can take long term if not, surgery will be required, will see.

As for Merissa, the news are not so good unfortunately, Merissa has had some horrendous problems from the intake of the Methotrexate, she started with tables one a week but she would feel really sick for days and just when she was just starting to feel better, was time to take another dose so, the specialist didn't like the way she was responding to it but, there is not a lot more out there to replace it so, he decided to have her to get an injection every week hoping that the effects would be less but, didn't work and she is now off that drug and waiting form the next appointment on the 5 February.

The specialist has told us from the beginning that, he would like to put Merissa on this new drug but, its expensive and the government doesn't allow new patients to start on it, not until they have been through a 6 month period on some alternative treatment with common drugs. I believe, the 6 months are coming up in February and I think that is the reason why the specialist requested Merissa to see him 10 days before the next appointment date, made on the day of the last visit..!

We hope that, this is correct, Merissa needs something that will work better than the Methotrexate, sooner rather than later...!

I don't know much about this new drug/treatment, I'm sure the specialist has mentioned the name but, I don't remember.

There are 2 other issues that are becoming also a problem, the first one is that, specialist wanted Merissa to start ASAP on another drug called Leflunomide but, Merissa's blood pressure is also reading to high, we believe that has something to do with the medications she is taken for her condition, she always had a good/normal blood pressure, right until she started seeing this specialist so, we assume that, some of his medications are causing the blood pressure issue.

Interestingly, at the last visit, he checked her blood pressure, after we wrote the prescription but, from the pressure readings, he got quite alarmed and made sure that Merissa would understand that, she is not to take this drug, until she sees her GP and discuss the high blood pressure issue. She has been taken her blood pressure every morning and, things need to come down before she can take this drug so, we are waiting to see the GP (next week) and see what the GP says about that...!

The other really nasty thing that Merissa is confronted with, has to do with her bad right knee, that has been a problem for 18 months or more. I thought that, the problem was caused by the arthritis but, that was not the case, arthritis swelling has disguise the problem to an extent, when the swelling started to come down, the knee started to move sideways and to the right with each step, apart from being painful is making Merissa lose her balance all the time and fall, far to many times.

I also thought that, the specialist had spotted the way Merissa was walking however, he may hadn't realised that was than a limp because, Merissa was wearing long dresses on each visit. Only the visit before this last one (monthly visits), I actually ask Merissa to lift her dress and ask her to walk a few meter for him to see, that when he freaked out and realised that he missed that problem all together, only after I made sure he saw what was going on, I also realised that he had missed it.

As a result, and after he tested her knee, he had no hesitation to ring a colleague of his, and make an urgent appointment for him to see Merissa, his speciality is knees...!
We are lucky that, Merissa doesn't have to wait another year or two before she could see a knee specialist, going publicly would take far too long so, we took the same route as we did with her arthritis specialist and go private.

Again, Mr.A is the reason why we can do this, funds will run out sooner or later but, now that we are on this pass, is no turning back, I will deal with those issues, when the time comes..!

I apologise to everyone for not making the update earlier, in fact, that was my intention a few weeks back, and in conversation with a couple of different friends, I had mentioned that I needed to give an update but, I endup forgetting about it, sorry...!

Cheers
George & Merissa
 

sbwertz

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I'm sorry she had so much trouble with the methotrexate. I was one of the lucky ones who had no side effects from it. However, after about 7 years, I was no longer metabolizing the tablets properly so I switched to weekly injections.

The new drug is probably one of the biologicals. I take Remicade (generic name infliximab). There are several others as well. They work very well for me. I've been on it for almost 7 years now. It is expensive, but is covered by Medicare here in the states.

I've had a new development as well. I have been diagnosed with Interstitial Cystitis. It is a chronic bladder inflammation that feels like a permanent bladder infection. Fortunately, with a change of diet, it is under control.

George, do you have my diabetic cookbook? If not I will send you a copy. My husband is diabetic, and I keep his blood sugar under very good control by controlling the amount of carbohydrate in his diet. He takes Lantus and a fast acting insulin if needed. By controlling his carbs, he rarely has to take the fast acting insulin. I'm pretty good at "decarbing" favorite recipes, so if you wife will send me some of your favorite recipes, I will see if I can make them more diabetic friendly for you.
 

OZturner

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George, Thanks for the update on you and Merrissa.<?xml:namespace prefix = o ns = "urn:schemas-microsoft-com:eek:ffice:eek:ffice" /><o:p></o:p>
Boy it doesn't just rain for you, it Pours.
<o:p></o:p>
Good news is that you both have sound diagnosis, and obviously a good medical team.<o:p></o:p>
My wife Evelyn, after years of problems with her prolapsed feet, and then as a consequence, her Knees packed up due to the mis-placed load being exerted on her knees. <o:p></o:p>
Her Surgeon told her it was a "Bi-lateral Knee Replacement or a Wheel Chair".<o:p></o:p>
She had both knees replaced simultaneously. <o:p></o:p>
Her Pain Management was handled Magnificently, and after spending 2 weeks in Rehabilitation, plus several weeks as an Out-patient, <o:p></o:p>
She is up and and doing great.
She is a strong advocate for anyone needing a Knee Replacement.<o:p></o:p>
It was February 2010 that she had her operation, and now wishes she had it done in 2000.<o:p></o:p>
I hope and pray that Merissa has a similar successful outcome.<o:p></o:p>
<o:p></o:p>
Thoughts and Prayers with you both.<o:p></o:p>
Brian.
 
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wyone

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So all of that going on in George's life and he still comes here and offers advice on a regular basis. You are both in my thoughts and prayers and I am really hoping for your Drs to find some answers and permanent solutions.

You two are lucky you have each other to help you through this, but remember all of us out here who depend on your knowledge and expertise. We truly do care about more than your latest wood creation or technique.

You are a vital part of IAP and we all know Merissa is a vital part of you.

Wishing you both the best medical care ever!
 

robutacion

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Thanks folks, we appreciate your understanding and support...!

Merissa's knee is pretty bad,and to be quite honest, I don't know yet which way her appointment in a few days time, will do or, which direction, the situation will take from there.

I don't think that, the knee joint is the problem but rather the ligaments that keep it together and in place. I remember well when it all started, it was about 3 years ago, she was trying to help me hook up a loaded trailer with wood in the vehicle's tow bar, she had the right left in the wrong position when she put some extra weight on it to help lifting the trailer just about 1" so that it would go in. The jack was as high as it can go because vehicle and trailer were are different angles so, the jack was unable to lift any more.

It was like someone had shot her, she screamed and fall to the ground, she was holding her right leg as it she was having a bad cramp so, I lift her up and made her lay down on the back of the wagon. She didn't walk for a while and all tests/scans didn't show anything out of place so, I got her a metal hinged full knee brace and that what she used for 3 months, so stand up and move around a little but not for long.

It kept coming and going but, that knee would let go when least expected and she would just fall to the ground hard, hurting herself a few times, from hands, harms and hip. Once she fall backwards on the verandah decking, hitting the back of the head, knocking her cold for a few minutes..!

I knew that, something was very wrong with her knee but our doctor didn't seem to find anything and then we started with the Arthritis issue and all of a certain, all the blame went to it but, I knew better, I knew that was more than just inflammation.

It really started to worry me when I saw her walk strange, looking from behind as she walks, when the right foot hit the ground and she transfers all her weight (which is considerable, similar to mine @ about 110kg +) that knee, instead of staying straight, it swings to the right as if, whatever holds the knee together on the right side is not there and the joint wants to come out of the socket to the right of the knee. Is really shocking seeing that...!

This last week, Merissa has become very stressed out about that knee and the extra pain she is now getting, she realised that, unless something is done and fast, something going to snap...!

I suppose, the urgency of the matter, was also realised by her Arthritis specialist, when she last saw him, that explains why, an average 3 months waiting to see such type of specialist, even going private, was waived and and appointment was made in a much shorter time period so, the only thing I can do is to make sure she doesn't do anything silly, until she gets seen by a knee specialist (next Tuesday, the 3/2/2015).

Until then, we wait...!

Cheers
George
 

robutacion

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Hi peoples,

Is hard to believe that 2 years have passed since my last update here however, my closest friends and those who asked, got an update more regularly.

In these last 2 years, Merissa went through a few different treatments, trials are of 3 months minimum, they can be extended to 6 and even 12 months, if the improvements are considerable otherwise, the current treatment is stopped and a new one starts.

The third treatment was the one that shown more improvement even though it took some time for the body to react positively, blood tests indicated that the inflammation levels were still high but now stable, and that was the best that Merissa felt since it all started.

Merissa was on this "infusion" treatment for 1 year but more recently the specialist was not happy with the blood test results and decided to stop the Infusion and start Merissa on another drug. When Merissa stopped the infusion, she was already started to feel a little more pain and swelling so, we put some hope on this new treatment and hoped it would be a fast acting one.

Not only the new drug was not a fast acting, it reverted any of the improvements Merissa got from the infusion and by the time the 3 months trial were done, Merissa was back to where we started, 3 years ago.

The specialists was concerned and disappointed with the results of the last drug, it should have been a lot better for Merissa but it wasn't so, he rushed to request another authorization for a new drug, this takes about 2 weeks to come back approved and Merissa can then get the drug.

We waited the 2 weeks and we hoped every day that it would come sooner as Merissa was in big troubles. At the 2 weeks time, we got a call from the specialist to let us know, he got his request "rejected" and sent back to him so, he needed to see Merissa ASAP to go through all the paperwork again, and get another authorization on its way, and wait another 2 weeks.

At this visit to the specialist, he could see how bad Merissa was and the possible mistake he made to stop the infusion, as he explained it to us, the Authoritory Department, has strict rules on what the specialists can prescribe and the order those new drugs have to follow starting obviously with the less expensive to them right to the most expensive ones that they impose a lot higher restrictions for obvious reasons, Merissa specialists due to what he saw, seems to have jumped the drugs cue to one of the more expensive drugs but by doing so, I didn't follow the cue and they rejected his request until the drug that he requires to administer between the one after the infusion that did not work and the one he wanted to put Merissa on and that he believe, it provides a great percentage of good results so, we are now waiting (another 9 days to go) for that drug that we hope is going to be better than the last one, after the trial, the specialist can then re-apply to what he wanted in the first place.

Merissa is at the moment in very bad shape, again. She can't walk, she can't hold a cup or a plate, and the pain levels are tremendously high, her fingers are starting to curl up at the joints and for about 3 1/2 weeks, she has been without any treatment, I get frustrated to see it like that, and I do the best I can to do all the "things" she would normally do, in the house and out plus, all my work that never stops however, I don't mind at all to have to do everything to help Merissa, she would/did do exactly the same for me, time and time again...!

At this momment, the wait is getting painfull and the fear that the new drug is not going to help Merissa, is more than enough to stress me out, as I'm sure, Merissa feels the same way...!

Lets hope things will work...!

Cheers
George
 
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OZturner

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George, Sorry to hear about Merissa, is not well again.
It is hard to believe it is two years since that previous Post, it only seems a short time ago.
It is annoying that the Health Department has Restrictions and Protocols for Prescribing Specific Medications for Certain Conditions.
As you pointed out it is designed to ensure that the application of drugs is followed for Certain Conditions, to avoid Doctors Leap Frogging Lesser Costing Medications, to Prescribe the Latest and Possibly More Expensive ones ahead of trying the Lesser Costing.
This system does take away from the Doctor his ability to Prescribe what he feels will be best for the Patient Now.
But regrettably, in our System of Government Assistance in Subsidizing the Cost of many Expensive Medication and only charging the Patient a Nominal, or Substantially Reduced, and sometimes a Zero Cost to the Patient.
I think I can recall in the previous post, you had mentioned that her Doctor wanted her to Try a particular Medication, that wasn't on the List of Subsidized Medications, and it would have cost an Arm and A Leg to Buy it, and it was out of your reach.
As in Merissa's situation, she has tried so many, and to have to take one that her Doctor passed over, is most unfortunate. But Regrettably It Is What It Is.
Here's hoping it this one is the one that will do her Good.
My Thought's and Prayers are with you both again.
Sincerely,
Brian.
 

robutacion

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George, Sorry to hear about Merissa, is not well again.
It is hard to believe it is two years since that previous Post, it only seems a short time ago.
It is annoying that the Health Department has Restrictions and Protocols for Prescribing Specific Medications for Certain Conditions.
As you pointed out it is designed to ensure that the application of drugs is followed for Certain Conditions, to avoid Doctors Leap Frogging Lesser Costing Medications, to Prescribe the Latest and Possibly More Expensive ones ahead of trying the Lesser Costing.
This system does take away from the Doctor his ability to Prescribe what he feels will be best for the Patient Now.
But regrettably, in our System of Government Assistance in Subsidizing the Cost of many Expensive Medication and only charging the Patient a Nominal, or Substantially Reduced, and sometimes a Zero Cost to the Patient.
I think I can recall in the previous post, you had mentioned that her Doctor wanted her to Try a particular Medication, that wasn't on the List of Subsidized Medications, and it would have cost an Arm and A Leg to Buy it, and it was out of your reach.
As in Merissa's situation, she has tried so many, and to have to take one that her Doctor passed over, is most unfortunate. But Regrettably It Is What It Is.
Here's hoping it this one is the one that will do her Good.
My Thought's and Prayers are with you both again.
Sincerely,
Brian.
Thank's Brian,

Yes, you are correct, at that time, that medication would cost approx. AU$25,000 per year without any subsidy and that was obviously not possible for us.

From what I understand (specialist hint), the treatment we are waiting for, and the only other option available at this point in time (hope they come up with some more and more effective medications...!) does cost a lot more than 25G's per year, from the lowest cost to the highest, there is an increase of the costs, many times of many thousands of dollars.

I can understand the government principle when it comes to what they subsidise and what medications they include, I also understand the fact that some doctors do misuse the medications they prescribe, in this case, only specialists can prescribe these sort of medications, and that themselves have rules to follow but, forgive me for not agreeing with most of it, and force people to suffer with drugs that they already know will not work or have very limited chances to be of benefit to the patient.

We don't have private health insurance so, using the private system to deal with a situation, may a faster but, the costs can be considered and out of question for people with low incomes. We pay more than if we had private insurance, the part we are asked to pay as the "gap" would be almost impossible to cover, and as any other private work done, if we haven't had the tremendous and most appreciated assistance/support from Mr. Anonymous.

I don't even want to think of how Merissa would be today, if we had to stay in the health public system, Merissa is not well at the moment but there is some light at the end of the tunnel and while, she have had some relief from her condition for a considerable amount of time since it all started, something she wouldn't have had in the health public system, and to validate what I just said, when she was first diagnosed with the debilitating RA, our GP confined with us that the waiting list to see this type of specialist would be between 2 and 2 1/2 years, oh boy, these waiting lists are a cruelty...!

So, and as I said before, Merissa is not in a good place at the moment but, she would be a lot worse if we hadn't had the opportunity to go private...!

Better days will come for Merissa, we will be OK...!

Cheers
George
 

Skie_M

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I got an email ad last night ... something about how a new pill was recently made legal statewide in the USA ... you might be able to purchase it and have it sent to you. It's a mail order "over the counter" type of drug. It MIGHT NOT be legal in Australia, but I hope that it is, as it's pain fighting ability should help her a lot.

It is called Cannabis Oil (yes ... oil made from marijuana). I've seen a lot of documentation concerning the uses of medical marijuana for non-specific systemic pain due to cancer treatments and other similar similar things, whole body joint pain included. You don't smoke this stuff, it's just a pill you take.
 

edicehouse

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George,
I missed the OP, but man thought, prayers, good vibes going your way. I saw where you put she is a little tougher, however I believe women are much tougher than we are!
 
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George,
I can empathize with you on watching your wife suffer and not be able to help. My wife went through something similar starting in 2013... she came down with a blood infection that almost took her from me... she wound up in the hospital for 2 weeks, then transferred to a nursing center for 4 months. I finally got her home and 10 days into her stay at home, she suffered a stroke that put her back in the hospital for again, only to find out the blood infection was back and has settled in her back and around her heart. She had to have open heart surgery to replace a valve in her heart, then home again with a port in her chest for another round of infusion to combat the infection. In the end, she has come out of most of this, but the infection left her with two fused vertebrae in her lower back that makes it impossible to stand for more than a short time. And one of the medications she takes for the heart problems causes tremors in her hands. Plus she's diabetic and since August we've been fighting edema in her right leg. The doctors prescribed wound treatment and over the course of the treatment they used a wound cover that had silicone in it and we're pretty certain she's allergic to silicone... her leg got worse instead of better, looked almost scalded... as of last night, after almost two months treating it with just a surgical gauze, it's finally beginning to look healed.
It's disheartening to watch her suffer through all this.
I know you are going through the same feelings... hang in there and things will get better.
 

robutacion

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I got an email ad last night ... something about how a new pill was recently made legal statewide in the USA ... you might be able to purchase it and have it sent to you. It's a mail order "over the counter" type of drug. It MIGHT NOT be legal in Australia, but I hope that it is, as it's pain fighting ability should help her a lot.

It is called Cannabis Oil (yes ... oil made from marijuana). I've seen a lot of documentation concerning the uses of medical marijuana for non-specific systemic pain due to cancer treatments and other similar similar things, whole body joint pain included. You don't smoke this stuff, it's just a pill you take.
Hi mate,

We are also aware of the many treatments that are coming out of the Marijuana plant, its medicinal potential and positive results with some people.

I don't know if we could use it or not if we could get our hands on it however, if Australia have not approved the used medicinal Marijuana she would have lots of problems because Australia Police is enforcing the non-use of certain drugs when driving and Marijuana is on their top list, with random testing on the roads, their testing tools now are very accurate and for anyone found with those prohibited drugs on their systems, they are in big troubles.

Merissa was doing most of the driving but, I have to do it now and until her legs/knees get better.

Thank you for your thoughts, I will need to find some more info about it.

Cheers
George
 

sbwertz

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George,
I can empathize with you on watching your wife suffer and not be able to help. My wife went through something similar starting in 2013... she came down with a blood infection that almost took her from me... she wound up in the hospital for 2 weeks, then transferred to a nursing center for 4 months. I finally got her home and 10 days into her stay at home, she suffered a stroke that put her back in the hospital for again, only to find out the blood infection was back and has settled in her back and around her heart. She had to have open heart surgery to replace a valve in her heart, then home again with a port in her chest for another round of infusion to combat the infection. In the end, she has come out of most of this, but the infection left her with two fused vertebrae in her lower back that makes it impossible to stand for more than a short time. And one of the medications she takes for the heart problems causes tremors in her hands. Plus she's diabetic and since August we've been fighting edema in her right leg. The doctors prescribed wound treatment and over the course of the treatment they used a wound cover that had silicone in it and we're pretty certain she's allergic to silicone... her leg got worse instead of better, looked almost scalded... as of last night, after almost two months treating it with just a surgical gauze, it's finally beginning to look healed.
It's disheartening to watch her suffer through all this.
I know you are going through the same feelings... hang in there and things will get better.
Chuck, my husband is diabetic and we have had great luck using Wound Honey to treat wounds that are hard to heal.

This is the one we use

https://www.amazon.com/Eras-Natural-Sciences-Manuka-Wound/dp/B001LEXKHY

It healed up lesions on my husband's feet when even placenta bandages wouldn't heal them.

Sharon
 

sbwertz

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George, I am so sorry! It makes me realize how lucky I am that I found a medication that worked for me (Remicade infusions) and that has had no side effects. I hope she is feeling better soon. I've been there....hands so swollen I had to have my wedding ring cut off. Yes the remicade is expensive...without Medicare my infusions would cost me $40,000 a year, but it keeps me mobile. Hope they get her back on something soon. It is not only physically debilitating, but it is emotionally debilitating. It is awful to have to depend on someone else to button your shirt or tie your shoes, or help you in the bathroom. I pray every time they take my blood tests before my infusions that there isn't going to be anything show up that would cause them to have to stop the Remicade!
 

robutacion

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Merissa update and my big mistake...!

Thanks Sharon,

Yes, is good to know your treatment is working well, you certainly don't want to start all over again, huh...?

I wish that this update was a more positive one, things are not going as we expected and I messed-up big..!:frown:

I have been very pissed-off with her specialist for causing the situation she has been on there is, not start the new treatment weeks ago, he messed up and he knows it in the mean time, Merissa has been in agony and I have been totally stressed with all these delays, seeing her get worse every day.

Last week, I contacted his office as I wanted to contact the department in New Zealand that processes these species authorizations, we have always been told the waiting time after the documentation is posted, is between 1 and 2 weeks last week we were about 10 days since the info was posted and I wanted to find out if the department has already processed the forms and if posted back or not.

A few hours later I get a call from the specialist to let me know that the Department does not offer a public phone number so, I couldn't contact them but he the specialist knew what I was after and he said that he has been in contact with the Department and that the forms have been approved and posted back.

This was last Thursday so I said to Merissa that, would be a good idea to get the blood test required before the new treatment/infusion can be given, in my head I though that, if the paperwork was on its way last Thursday, we or the Hospital where these infusions are administrated would receive the approval, that would mean that we could get it from the chemist and make an appointment ASAP to have the new treatment started.

We knew that the blood test results would have been provided to the specialist and the Hospital that will give the injections by Monday so, if everything went right, Merissa would be getting her infusion on the Wednesday or the day after but that was not the case.

We waited Monday, Tuesday, and Wednesday, no mail and or a call from the hospital to let us know the treatment could start soon, Wednesday lunch time, I contacted that hospital to find out it they have received the approval or not, after passing the call between a hand full of different departments, I finally got someone that could tell me something about the issue, I was told that they have just received the treatment authorization that morning (bull$#!t) and that they were going to contact us so, when I asked when could Merissa start the treatment, she tell's me that she can't get in before the 24 March they were full, this was the 8 March.

Well, I got really upset and regardless of what I would say, it was no way I could get Merissa in before the 24/3.:mad:
I got on the phone immediately with her specialist and I "expressed" my disgust about the situation, somehow, he already knew of the treatment date I was given just 30 minutes prior and he said that he couldn't do anything about it, I reminded him of how Merissa was suffering and getting worse every day when she should have had the treatment started weeks prior, he knew I was "boiling" so he said that, Merissa should shouldn't be getting that worse and in so much pain, he asks, has she been taking the tablets I gave her last time you guys were here...?

Now I was baffled, tablets she should be taken prescribed that day..?:eek: the only thing I remember was a couple of pages he wrote for us to follow as soon as the treatment would start, in fact, there was a 14 day instruction steps, for the day she would get the first infusion, Merissa also got a prescription for 2 lots of tablets, the same drug but is 2 different dosages, 5mg and 25mg, the name of it was mentioned on the instruction page for day 1 of the 14, she was to take 7.5mg that morning of the infusion, and then the dosage would change during the 14 days course, this would coincide with the day of the second infusion, they are to be administrated fortnightly.

He then tells me that yes, he gave us the instructions for the 14 days from the start of the treatment BUT that, he said that Merissa should start taking 7.5mg daily until the infusion day, that we both missed and I particularly have been very upset because Merissa trusts me to take instructions from doctors as she get's confused very easily, I keep telling her that is not right, that she is not taking anything for the inflammation in her body while she is waiting for the infusion so, when I found out that Merissa has been 12 days without these tablets that would have stabilised her enough while waiting for the infusion and I can not forgive myself for making such a painful mistake...!:mad::mad::mad::mad::mad::mad::mad::mad:

She has had 2 tablets (one daily in the morning with food), she took the one on last Wednesday after lunch but that doesn't matter, what matters is that she is now getting a little help from these tablets, I will be ringing the specialist today (Friday afternoon) as per his request, for the possibility to increase the dosage slightly, Merissa says that she can feel an improvement already only after 48 hours so, we will see what the specialist says.

He now knows that, he messed up once and that I have been frustrated with it but now, he also knows that I messed up and I don't really know which one is worse, I feel bad enough for not taking enough attention, I suppose, he didn't thing necessary to add that to the instructions pages, I have been quite OK with following his instructions in the past so, I can't blame him, I can only blame myself.

Poor Merissa, she tries to comfort me and keep saying for me not feel so bad about it, she can remember him saying that either, that it was an honest mistake, yes it was but, that doesn't change the fact that she suffered a lot more than she should if she had taken the tablets. This is a good example of the sort of person she is...!

I sincerely hope these tables she is on now, do what the specialist said they should do, it will make the wait for the infusion a lot less painful for both of us, for sure...!

Better days will come..!

Cheers
George
 

Edgar

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Sorry to hear about the mixup in the doctor's instructions, George, but I'm very happy to hear that Merissa is on the right medication and starting to get some relief.

I know that you feel badly about the situation, but try not to beat yourself up too much about it. It's difficult to always remember everything that a doctor tells you verbally when you have so much on your mind during a visit. He really should have included those "start right away" instructions in his written notes.

The delays in getting her infusion treatment are just ridiculous.
 

Skie_M

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Mmmm ... speaking of notes, to help prevent this next time, it may be a good idea to bring a notepad and jot down all important details as they come up. Appointment dates, visit locations, test results due back on x day, return visits for followups, and double-check for any and all prescriptions.
 
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Wow, a sad and unfortunate situation. Like Edgar said, you cant beat yourself up for that. Why didn't the doctor give you a written (well, not hand written if your doctors write like they do here in the states)or typed up set of care instructions? It is impossible to remember all that's said in situations like this when you've got so much on your mind, and to make that more complex, the doctors use terms and big fancy words that most times we really have no idea what they really are. Also, if it wasn't for your understandable frustration and disgust with the way things were being handled, and you contacting them , you STILL wouldn't have known.
Don't let that get you down, a person can only do so much, and she needs you to be strong now more than ever. And...when Merissa is back to feeling pretty good ( and it will come soon) you've got to be strong just in case she chases you around with a cast iron pan for payback!!!
Hang in there George, we will keep you both in our thoughts and prayers!
 

west aussi

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George, Having been through something similar the only advice I can give is no matter how hard it is, keep a positive attitude and ride over the crap. If you don't your in trouble. The 2 greatest things we have in our life is LOVE and HOPE and we see your love for Merissa and our hopes and prayers go out to you both. Ian & Jill.
 

robutacion

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Australia - SA Adelaide Hills
Thanks guys, I always appreciate kind words...!

I think I may start to take my voice recorder and use it (with the specialist knowledge and permission) and hear it all again at home and when more relaxed, they may help to pick up on things missed during the consultation...!

The tablets that Merissa is now on, the ones she was suppose to have start taking after the specialist appointment but that I stuffed-ud is the Panafcortelone, she is on 7.5mg daily but soon after the first infusion (that we so much have been waiting for...!) she will go to 60mg for a few days, then back to 30mg a few days later back to 7.5mg, this will all have to happen in 14 days cycles, as per the infusions.

Has been now a few days since I realised my mistake and got Merissa on those tablets, according to her, the pain sharpness ha been reduced and the swelling in her hands and feet are a little reduced, these tablets alone are not capable of stabilise the RA, they are a supportive drug for the new infusion treatment she will start on the 24 March.

Any improvement even if slightest, is always welcome...!

We appreciate any and all positive thoughts..!

Thank you,:)

Cheers
George
 

sbwertz

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Messages
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Phoenix, AZ
Do you know what her new infusion is going to be? Just curious. Hope it works fast!

Give her my love, she is often in my thoughts and always in my prayers.
 

robutacion

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Do you know what her new infusion is going to be? Just curious. Hope it works fast!

Give her my love, she is often in my thoughts and always in my prayers.
Hi Sharon,

According to the info sheet the specialist gave her, the name is Rituximab the Brand name is "Mabthera".

I'm most surprised and pleasantly amazed as to the improvements Merissa has shown since she started on these new tablets Panafcortelone, even though at a fairly small dose compared to what she will be on for the first week after the infusion (60mg) and then 30mg for the following week and then the next infusion is administrated and from what I believe, the intake of the new tablets will be repeated every 2 weeks for at least 3 months, the minimum time required for the test.

We also speak of you often, if not for the association you have with the visually impaired people, your pen turning and off-course your battle and experience with the RA.

While I'm talking about pen blanks, any news of the big box I sent..?

Cheers
George
 

SteveJ

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Grand Junction, Colorado
George

I am so sorry your helper has been down, but glad that you at least have a treatment plan. Rituximab is one of the meds my son is on for his cancer. His treatment is called R-CHOP, each letter representing a different drug. Costs about $30,000 for each treatment, hopefully ending at six. She will probably get a rituximab/methotrexate combo which hopefully both costs less and has less side effects. Watching a loved on receive these powerful drugs is difficult to say the least. Let her know that she is being prayed for.
 

robutacion

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George

I am so sorry your helper has been down, but glad that you at least have a treatment plan. Rituximab is one of the meds my son is on for his cancer. His treatment is called R-CHOP, each letter representing a different drug. Costs about $30,000 for each treatment, hopefully ending at six. She will probably get a rituximab/methotrexate combo which hopefully both costs less and has less side effects. Watching a loved on receive these powerful drugs is difficult to say the least. Let her know that she is being prayed for.
G'day Steve,

Thank you for your words, I will let Merissa know of your thoughts...!

Merissa doesn't do well at all with the methotrexate, she has been on it in the beginning but she had to stop. For whatever the reason, the Department that gives the authority for these treatments seem to be pushing methotrexate on each treatment there is, they will only allow a new drug to be tested if it is done in conjunction with a certain amount of methotrexate.

The specialist knowing how Merissa reacts to it, have organised a special tablet that will need to be taken 4 hours after each weekly methotrexate injection, that tablet does cancel the methotrexate before it starts to do harm, this seems to be working and Merissa doesn't seem to suffer from any of the side effects she knows well from the methotrexate intake.

I was not sure of the treatment costs but I have ben told that it was very expensive and reason why, the patient will have to go through many other less expensive treatments before this one is authorised. As far as I know, this new treatment will be administrated twice a month for at least 3 months so, you are correct, the 6 treatments are all that is schedule at this point.

Cheers
George
 

robutacion

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Hi everybody,

I have some update for you guys, I will try to be short and avoid extra details as last Friday 24 March (Merissa's new infusion treatment), endup being a very stressful day for us, including our 2 pet dogs which the smallest Teddy was also very sick.

Anyway, we were at the designated Hospital (65km away) at 10:00am as requested, only to be told that, this treatment was not like the previous infusion that lasted 2 hours, this one would last at least 6 hours.

We had other appointments for that day, based on the 2 hours previous treatment time so, everything went highwire from there.

Being so far away from home with no place to wait with the dogs, in the 34° heat, I decided to drive home and wait there.

About 1:00pm I got a call from Merissa to let me know that, they had to stop the infusion because she came with a nasty reaction from the infusion (so we thought). She was panicking, a doctor was called to asset her and lots and lots of blood was taken for all sorts of test, trying to identify what caused the reaction. On that call, Merissa also said that the doctor had told her that it was a good chance she would have to be admitted overnight so that they could monitor her closely.

A few minutes later I got a call from this female doctor, she wasn't aware that Merissa had called me with the news so basically, she said pretty much the same thing Merissa said apart from the fact that, she was waiting for one of the blood tests results to determine if Merissa had to say overnight or not however, if she was to come home, there was a risk she would get sick, if some of the described symptoms would develop, I would have to drive her to the emergency immediately, both Merissa and I did stress the fact that home was a better place to be.

I was told to ring back at 4:00pm to find out if she would stay there or I could get her home and for a few hours I was stressed out but I made that call only to be told that, the preliminary blood test was OK so, the risk to big problems has been adverted.

Another 65km later at about 5:00pm I was helping Merissa to the vehicle, she was weak from having all that blood taken and a bit shaken up from the events and the fact that, she had half of the new drug in her system and a bit sick in the stomach.

We got home safely and everyone settled down for the evening, I kept a close look any strange signs of troubles from her but thankfully, nothing bad did eventuate.

We are now waiting for her specialist to contact us with some instructions on how to proceed next and when can Merissa return for another attempt...!

Oh boy, quite a day that was, fortunately, it endup well, Merissa was home and I still managed to get Teddy at the Vet that day at the appointment time and since Teddy has made an amazing recovery, I'm a lucky man...!:)

Cheers
George
 
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OZturner

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Aug 5, 2013
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So pleased that Merissa is progressing after her Incident, and hope that she can successfully complete her treatment, if possible. Also great new about Teddy.
Keeping you and Merissa, in my thoughts.
Regards,
Brian.
 
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