My "helper" is down...!

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sbwertz

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Oh George! If you guys didn't have bad luck you wouldn't have any luck at all! I hope she is going to be able to tolerate the new drug. I know some people here who are on it, and it is working really well for them. Keep us posted.
 
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robutacion

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Oh George! If you guys didn't have bad luck you wouldn't have any luck at all! I hope she is going to be able to tolerate the new drug. I know some people here who are on it, and it is working really well for them. Keep us posted.
Yep, you summarised it perfectly...!:frown:

Our hope is that this new treatment will work well, not the best start but, she will be trying it again in a couple of weeks, her specialist as confirmed this today...!

Cheers
George
 

sbwertz

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George, I just got word from my son, who has multiple sclerosis, that they are starting him on rituximab. Apparently it is the hottest new MS treatment. Hope he does well on it.

Has your wife started treatment again yet?
 

Dalecamino

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George and Sharon, my girlfriend Susanne was diagnosed with Anca Associated Vasculitis. She received two doses, each dose weeks apart. Backed up with a very expensive pill regiment. She still has lung congestion but is taking meds for that as well. The Retuximab did its work, and the Vasculitis in her Kidneys has cleared up for now anyway. George, I sincerely hope this medication works as well for Merissa.
 

robutacion

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Thanks guys...!

There has been a number of things happening and somehow preventing Merissa to start that new treatment. After the first failed attempt, the specialists had to make some additional permission requests to allow Merissa to have the full treatment and not half of it so, we waited for a little while.

The permission finally came and an appointment was made for the 21 April but, we both developed some Flue/Cold that week so, we had to cancel her appointment as Merissa can not have any of those things when the treatment is administrated.

The new appointment is made for the 12 of May so, we hope there will be no problems.

Is good to know that other people you know have had good results with this type of treatment, we are certainly putting a lot of hope in it...!

Cheers
George
 

robutacion

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Hi everybody,

The 12 May appointment never happened (same reasons as before) and after a few more weeks of waiting, Merissa finally completed her first new treatment/infusion last Wednesday 7/6/17.

This time everything went well, from 9:30am to 3.30pm finishing a little early than expected and that was fine by me.:smile:

The only obvious side-effect was her short of breath that improved each day beeing fairly normal now.

Her next infusion is on the 21/6, we don't know yet if there are any more infusions on this treatment, we will find out soon.

And while Merissa feels OK, is too early to notice or expect any improvements that will be something that time will tell...!

Cheers
George
 

sbwertz

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Good news, George. I really hope this works for her.

We've had a rough couple of weeks, too. My husband just got out of the hospital last night. He got a MRSA infection in his toe (he's diabetic), that went into the bone. He spent 4 days in the hospital. They started him on six weeks of twice a day IV infusions of Vancomycin ($1700, insurance wouldn't cover because I did the infusions at home.) After five days at home he suddenly developed an allergic reaction to the antibiotic. Spiked a fever, broke out in a head to toe itchy rash, etc. Back to the hospital for another four days. They changed him to a different antibiotic, that seems to be working fine. They were getting ready to send him home when they told me that the Daptomycin was going to cost $10,000 for the 29 days he would need it! Medicare covers at-home infusions like a regular prescription. So they set it up so that I take him to an infusion lab every day for the infusion, so Medicare part B will cover it. That was our heart test for the week! He still may have to have surgery on the toe if the antibiotic doesn't get rid of the infection. But toe amputation can cause other problems with the foot (neuromas, bunions, etc) so they want to avoid that if possible.

The first choice of antibiotic for MRSA is sulfa, and he is allergic to sulfa. This is the third time he has had a MRSA infection in the last ten years.
 

robutacion

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Thanks everybody,

Sharon,

I'm sorry to hear about your husband toe infection/problems, when I was reading it, I was thinking that removing to infected toe would be a possible solution but then, I've read about the complications that he would be exposed to and I realized that wouldn't be any good.

I find it hard to believe sometimes when I hear about drugs/treatments costs, why so much...?

I'm glad that you are able to minimize the costs by doing some of the required work, I doubt they would allow it here...!

We both saw out GP today, we are waiting on the blood tests results after Merissa's infusion, not arrived yet so, we didn't have the GP opinion but he will call if is anything to worry about.

So far so good...!

Cheers
George
 

robutacion

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G'day,

Well, Merissa is in big troubles, the 2 Retuximab infusions/treatment did come out as failed, not that surprised us as Merissa never had any improvement while on it, in fact, there has been now over 4 months since Merissa has had any relief.

According to the Department in charge of these special treatments authorizations, there are 5 possible treatments allowed/covered by the Government funds, Merissa is on her last one that will arrive today if it fails, she has to wait 5 years before she can apply again.

These new "Biological" treatments are extremely expensive, tens of thousands of dollars each so, I can understand why the Government is not only selective but also restrict with their prescriptions, however, the though/possibility is most unsettling and scary.

According to her specialist, this last Biological treatment called Certolizumab also known as Cimzia, will be administrated with a cocktail combination of "old style" drugs hoping that Merissa will have a positive/improved reaction.

The drug is in a form of an injection that will arrive this afternoon from which I will administrate it to her so, it would be reasonable to say that Merissa is starting today her 5th and last approved treatment for the next 5 years so, is extremely important that it will work and start to work sooner rather than later as Merissa has reached a very high inflammation percentage with lots of swelling, joints "curling" and pains.

This has been a long road and one that would not have happened this fast if wasn't for the extreme generosity of Mr. Anonymous, allowing Merissa to be put in the "private" system and have access to private specialist and test facilities that would otherwise not be possible or at least, be under waiting lists that can be years long...!

So, we try to keep positive but I know that Merissa is getting extremely agitated and frustrated, I try my very best to help her in any way I can...!

It will take a few weeks before we know if this new treatment is working in some way, I will keep you guys updated...!

Cheers
George
 

Noot17

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Thanks for sharing, George. I appreciate everyone's openness and support in this forum. I'll keep you guys in prayer.

Eric
 
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Casual Conversation

So sorry about your helper. I can sympathize with you. My wife also is in almost unbearable pain 24/7. I started with Knee replacement surgery. Severe burning all the time. Four Doctors told her it was a pinched nerve in her back (Neurological testing seemed to confirm that). So she had the back surgery to fuse the vertebrae on either side and relieve the pressure. No help for the Knee and now has the same pain in her back. She never got involved much in the woodturning but none the less she is still my helper.
 

znachman

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I send you and your wife Prayers and all the best from the holy city Jerusalem Israel
 

robutacion

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So sorry about your helper. I can sympathize with you. My wife also is in almost unbearable pain 24/7. I started with Knee replacement surgery. Severe burning all the time. Four Doctors told her it was a pinched nerve in her back (Neurological testing seemed to confirm that). So she had the back surgery to fuse the vertebrae on either side and relieve the pressure. No help for the Knee and now has the same pain in her back. She never got involved much in the woodturning but none the less she is still my helper.
Thank you to everybody, Merissa reads these posts and she gets overwhelmed but I have to make reference to you Larry (ljpilcher@suddenlink) and your wife's situation.

It's bad enough that we can suffer so much from issues such as the ones of Merissa, she is only 44 years old while I'm a 60 years old fart, but she got "hammered" pretty bad with this rheumatoid arthritis, her right knee and hip are half destroyed and pains associated with that are enough to drive anyone up the wall however, one would believe/expect that surgeries such as the ones your wife has been exposed to would minimize the pain and that didn't seem to have happened so, it makes the possibility of surgery(ies) that in Merissa's case were rejected due to her being still too young, a proposition that goes from a possible solution to an extra aggravation and that is not something that I would like to see Merissa going through.

My wife Merissa has been a lot more than a "helper" with the trees/wood/timbers,she has been my HELPER in every step of my life since I met her 17 years ago, a 24/7 companion/partner that I wish I had met long ago.

Did I say that I love her very much..?:biggrin::wink:

Cheers
George
 

robutacion

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Merissa update

Hi peoples,

Just a quick update on Merissa's new treatment.

There has been a considerable reduction of the inflammation levels in Merissa's body, the swelling has been minimal and the pain tolerable so far (touch wood...!).

The new treatment "Cimzia" that I inject on her together with a cocktail of other older treatments/drugs seem to be helping a lot, there are some side effects that are a little annoying but, a small price to pay considering the possibilities.

In resume, so far so good, let's hope Merissa's body can sustain this treatment for a long time and that the slight improvements never stop happening, it may be not cured but keeping it under control has been an arduous road.

Cheers
George
 

Jim Smith

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George,

I am very sorry to hear of you and your wife's difficulties. I will keep both of you in my prayers for a complete recovery.

Jim Smith
 

jennera

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Happy to hear she is getting some relief! We will continue to pray for both of you.

Sent from my SAMSUNG-SM-G890A using Tapatalk
 

sbwertz

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George, how is Merissa doing now. Haven't seen an update in a while. Hope she is still doing well. I think of both of you often. Give her a hug for me

Sharon
 

robutacion

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George, how is Merissa doing now. Haven't seen an update in a while. Hope she is still doing well. I think of both of you often. Give her a hug for me

Sharon
Hi Sharon,

Well, the new treatment itself is helping her but she has to interrupt it when she comes out with a cold or anything else that makes her sick and these last few months she had to stop treatment a couple of times for about 2 weeks at the time and if it happens when the new injection is getting due that means that the 2 weeks the injection lasts for is almost gone and unless she gets if every 2 weeks Merissa really struggle, is like as the 2 weeks are wearing out, her body tells her is getting time for another shot so, if she has to endure a couple of weeks without the treatment medication on her, she goes backwards and in no time the RA symptoms attacks her badly.

It is difficult to predict if this current treatment is going to continue to work and for how long, the hope is that it does even though it makes Merissa feeling a little sick for the first 72 hours after she gets the injection that I give her but after that, she is OK(ish).:smile:

Cheers
George
 

sbwertz

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Yeah, I have the same problem with the Remicade and Methotrexate. I have to go off them if I am sick with anything. Fortunately, I seldom have to be off for more than a week. A combination of Naproxen and Tylenol plus the Lidocaine patches and cream get me through the rough spots.
 
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robutacion

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Yeah, I have the same problem with the Remicade and Methotrexate. I have to go off them if I am sick with anything. Fortunately, I seldom have to be off for more than a week. A combination of Naproxen and Tylenol plus the Lidocaine patches and cream get me through the rough spots.
Yeah, Merissa still has to take the Methotrexate injection every week, that is a "condition" to have the new treatment approved, however, the doctor prescribed her some tablets that she needs to take 4 hours after the injection, that cancels most of the nasty side-effects of the Methotrexate so, if she gets sick all of her RA medications has to stop to be taken...!:mad:

I will look into the Lidocaine patches, they seem to be a good option.

Your willingness to help is most appreciated, thank you...!:smile:

Cheers
George
 

sbwertz

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Merissa makes me realize just how blessed I am. I get no side effects from my methotrexate shots, no side effects from my remicade, and the combination of the two have kept me in remission for almost 15 years. Only when I have to go off my meds because of an illness do I have problems with pain from the RA.

I had Pneumonia in February, and had to go off the meds for about two weeks. That's when the lidocaine and naproxen/tylenol come in to play. Unfortunately, I got the pneumonia just a few days before my remicade infusion was due, so I was at the very end of the meds cycle. So it nailed me pretty good. It took about a month after getting back on the meds to be back in full remission. Now if they could just come up with something for plain old osteo arthritis that works as well. The lidocaine cream and patches are very helpful for osteo arthritis pain as well.
 

robutacion

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Merissa makes me realize just how blessed I am. I get no side effects from my methotrexate shots, no side effects from my remicade, and the combination of the two have kept me in remission for almost 15 years. Only when I have to go off my meds because of an illness do I have problems with pain from the RA.

I had Pneumonia in February, and had to go off the meds for about two weeks. That's when the lidocaine and naproxen/tylenol come in to play. Unfortunately, I got the pneumonia just a few days before my remicade infusion was due, so I was at the very end of the meds cycle. So it nailed me pretty good. It took about a month after getting back on the meds to be back in full remission. Now if they could just come up with something for plain old osteo arthritis that works as well. The lidocaine cream and patches are very helpful for osteo arthritis pain as well.
Not having the nasty side effects is certainly a blessing and while Merissa's Methotrexate afterwards tablet helps a lot, the same can not be said for this new treatment she is on, most times for the first 3 or 4 days of the injection I give her, she gets pretty sick, doesn't eat and her body simply doesn't want to function, she had her last injection this last Friday and she has been struggling since, today is Monday and still going, for some reason this time got her a little harder than normal...!

Cheers
George
 
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gr8macbeth

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You guys will be in my prayers. You have an inspiring relationship with your wife, and I love the recognition you give her in helping you. That is something that I should be better with my own wife. I hope she feels better soon, and will be back spending time with you again soon.
 
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