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Margaret

Going off Plaquenil

36 posts in this topic

Hi judyt,

 

The rheumatoloist is saying I have myositis, although technically a proper diagnosis needs a muscle biopsy, which I decided not to do.  But my CK levels were high (should be 160, I'm at about 1200-1400, which is considered mild, because myositis can bring you to 12000), and I had an MRI which showed fasciitis.

 

But even though my CK levels aren't terribly high (they climbed to that level but kind of plateau'ed there), she did some muscle strength tests, and saw that I had a significant amount of weakness.  In my shoulders, and my abs (which surprised me, I didn't realize I was so weak there).

 

The prednisone has helped somewhat, but we'll see what the azathioprine does.

 

Shelley - interesting benchmark, the toe-touching.  I should try to figure something that works for me (toe touching will be an impossibility for me - I couldn't do it when I was healthy and in good physical shape either!  ;) )

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<<Scleroderma is the worst form of arthritis>>

 

Shelley....is it really considered an *arthritis*?  My Dad had Rheumatoid Arthritis and my Mom has Gout in her left thumb/wrist.  Just wondering?

 

Margaret

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Hi,

That's interesting!!   I just did 10 toe touches :yes: , that wasn't too hard, but once upon a time I could put my palms on the floor and I can't now!!

 

Amberjolie, yes I thought I remembered about the Myositis and you deciding not to have a Muscle Biopsy.   I was able to "show off" to an Haematologist I consulted recently that I am almost incapable of climbing stairs.   Her consulting rooms are in an inner city 2 up 2 down house and being tall and narrow it has at least 15 maybe 20 steps in a flight.   It was a mission for me to get up there.   At the end of the consult she said she would get my CK tested and it came back as within normal range.   The thing is that I remember being unable to keep up with my friends when we were sightseeing in 1968 when I was only 24.   I was as fit as I would ever be at that time.   It's just ME I guess.

 

Yes Margaret, Sclero is one of the very many diseases which are grouped together as Arthritis and that is why the main Practitioner we consult is a Rheumatologist.   It also means that, here at least, the support people ones doctor would recommend are so busy with all the other more common ailments that they have never even seen a case of Scleroderma unless it includes Sclerodactyly.   Even that is very rare.

 

Ah well, we can just soldier on and try to do 10 toe touches a day and hope for the best.

Judyt

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Hi Margaret,


Yes, like Judy said, scleroderma is one of the diseases grouped under arthritis.

 

There is a PDF from Johns Hopkins about Scleroderma that you might like. On page 3 it says,"The “arthritis” of Scleroderma is different from the other types. It hurts and causes stiffness for long times without much swelling. Fibrosis of the capsule of the joint can happen and restrict motion of the finger or joint. What You Can Do:Usual anti-inflammatory medications may not be as effective."

 

You don't need redness and swelling in order to be suffering from the joint pain (arthritis) of scleroderma.

 

:emoticons-group-hug:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Thank you for the toasty warm welcome. Can I put my hands on it? ;) I missed the original hippie years. My salad days were in the grunge/generation X era. I think all that depressing music and ripped clothing left me in an existential funk that doesn't always (ever?) lend itself well to a positive outlook.

 

Good luck with your son's change of doctors, Margaret. It's hard starting over, but sometimes it helps to have a fresh outlook.

 

I'll post a proper introduction in a new thread.

 

Kitty

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Well this is definitely appropriate timing. I came to the forum to research joint pain. I have been on Plaquinel for 7 months. It helped a lot at first.

Saturday I was going up the stairs to bed and felt a slight pain in my right knee. Sunday when I woke up, I couldn't put any weight on my bent knee. An afternoon at urgent care/ER and it was declared a sprain. I was given an immobilizer which I used up to Wednesday, less each day. Incredible pain has decended on my entire body. I feel like I was hit by a truck. It seems like every tendon is screaming at me. I saw my PC and he said it is tendonitis, order for PT. Well, he also said that it is tied to the connective tissue disease I have.

Yesterday the pain was so bad that I called the rheumatologist out of desperation. I talked to the nurse today, and after she passed my questions on to the doctor, I have an appointment to see him Tuesday. Luckily spring break! Yay!

Would an injury cause reaction like this? I think I might have a small tear in the knee tendon or at least strained it somehow. Don't know how, but I was hanging laundry up on the lines in the basement. I've been limping around, so I know I have thrown off my normal stride. But elbows hurt, big toes hurt, both knees now, ankles, wrists, fingers even. My hips hurt, but I know I have some arthritis there.

Tried taking ibuprofin for a while, but tummy won't take it anymore. I don't like taking acetaminophen too often. Really concerned I could easily take too much.

Mando.

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Hi Mando,

 

I wouldn't dare hazard a guess as to what's gone haywire. But I'd sure be eager to hear what your rheumatologist has to say, and I hope that you are on the mend soon!

 

:emoticons-group-hug:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Hi Mando,

 

I'm really sorry to hear that you've been suffering so much.

 

I do hope that your rheumatologist can suggest something to help you and relieve your pain.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Thanks Jo and Shelley.

Other than slow progression of some issues, I was doing great at the beginning of the school year. I can tell that stress has played a big role in the worsening of some symptoms. Summer isn't too far off, so I hopefully will have time to get the stress under control.

I'm glad I tried Plaquenil, it made a big difference. One of the symptoms that has been worse is fatigue with the increase of stress. So, I will wait to see what the rheumatologist suggests.

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Hi Everyone,

 

Gareth met with the new Rheumatologist and he appeared very much aware of Gareth's issues.  I guess he actually read his files and  knew what was going on. He agreed with decreasing the Plaquenil and said to keep it at 3 days a week...for now. When I explained the on going pain for the past 8-9 moinths and no one finding the cause, he said there was no reason for him to be in pain constantly. He suggested he start on Meloxicam...an NSAID medication.  Give it once day for two weeks and report back. He is concerned about it upsetting his stomach but said to try it anyways.

 

So...we will wait and see what the next 2 weeks bring as far as pain relief goes.

 

Take care, Everyone.

Margaret

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Please keep us posted on Gareth, Margaret.

 

...a doctor actually read files?!?

 

Mando, How are you feeling now? I hope you are feeling some relief now.

 

miocean


ISN Artist

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Waiting on blood tests that the rheumatologist ordered. Otherwise, yes improving. The overall pain has subsided some and my knee is getting better with therapy. It was a pinched plica in the knee and bursitis of the tendons on the bottom of the knee. Rheumatologist ordered blood work to check on levels, but otherwise things are the same as usual, which is good because they aren't as bad as they were a week ago.

It will be interesting to see if any changes happened with the blood work. As to reading records, I swear that they don't even try to scan through the records. When we talked about what I could do for my dry mouth, he suggested some medications. I've tried one and it caused too much trouble with my esophagus and stomach. He looked at me funny when I said I couldn't swallow pills and that apple sauce is the worst thing to swallow. My daughter hates swallowing pills and it is not the same as having an esophagus that isn't sending things down. I think he forgot that I have esophageal dysmotility and my gastro is even in the same clinic. He suggested a big glass of water. :(

Thanks for thinking of me.

Mando.

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Hello everyone,

I am thrilled to have found this place.  I don't really know where to start.  In 1993 I was told I had lupus with over lapping scleroderma. 

 

I took predizone for seven years and felt like this was doing more harm than good so I weaned myself off of it, I did improve.  I never suffered much until 2009.  In 2009 I was diagnosed with stage 3 breast cancer.  I under went chemotherapy and radation treatment.  During chemo it seemed that the scleroderma exploded.  I was desperately seeking relief from the stomach issues I was having. 

 

Two GI specialist have told me nothing can be done for that except to stretch my esophagus about every three months.  I am seeing a new rheumatologist and was told the same thing.  They put me on plaquenil 200mg twice daily.  This made my nausea and belly symptoms worse and made me very light headed, I fell a lot.  So I stopped taking it.  Was this a mistake? 

 

I don't go back until June.  I live in a very remote part of Oklahoma and the doctor's here don't seem to understand this at all. And truth be known they don't seem to care. 

 

Did I goof by stopping the plaquenil?  I am so scared, can hardly eat.

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Hi Cathey,

 

Welcome to Sclero Forums! 

 

Well, you didn't necessarily goof by going off the plaquenil -- as long as you did that with your rheumatologist's approval. So the question is, did you discuss your side effects with them and agree to discontinue it? 

 

Many of the side effects of plaquenil can be overcome by just taking your dose at bedtime and you will sleep right through the worst of the side effects. You might even try starting at a lower dose and building up more gradually, because some of us are more sensitive to some medications. Those are ideas you can ask your doctor about.

 

In Oklahoma, scleroderma is quite prevalent because it runs in the family in the Choctaw Indians.  If you are all or part Choctaw, you may find it fascinating that researchers were able to find a genetic component to scleroderma by studying the Choctaws, as all of the folks with scleroderma are descended from the same ancestor.  But of course, not everyone in Oklahoma is a Choctaw!  I am just saying that because...well, no reason, just because it is a fun thing to blabber on about. :emoticon-dont-know:

 

If you did happen to go off the plaquenil without your doctor's knowledge, you may want to make an appointment to discuss this with them, and perhaps try it again with another approach, or try another treatment.

 

Meanwhile, please try your best to relax a little. Tension does us more harm than anything else, and relaxation probably does us more good than any medication. Surely, if you're anything at all like me, it can't be the first mistake you ever made, and if you follow in my footsteps, it definitely won't be the last, either! :unsure:

 

:emoticons-group-hug:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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