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Margaret

Going off Plaquenil

36 posts in this topic

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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Hi Cathey,

 

Welcome to these forums!

 

I'm very sorry to hear that you've been having so many health problems and it does sound as if you aren't getting much support from your doctors. I have no actual medical training, but as Shelley has advised, you should really have the approval of your rheumatologist before discontinuing with medications. Perhaps you could go back to your doctor and explain the position? I started taking an immune suppressant which was effecting my liver enzymes; however, after a little tinkering around with the dosage with my consultant's approval, I've had no further problems with it. 

 

I've included a link to our medical pages on Gastro Involvement, which I hope you'll find interesting and helpful.

 

Now that you've joined our community, please do keep posting!

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Shelley,Judy & Joelf,


Thank you so much for your response. It really means a lot to me that I have at last found someone that at least knows what I'm talking about. I have felt so alone.


When I started chemo I weighed 236 lbs, I now weigh 147 lbs.  Can only eat a few bites at a time.  Is it true that nothing can be done about this?  I truly am so scared.


I was told about the Choctaw Indians, there is some Indian blood in my family, not enough to be classified as Indian.  And I have always been told that it was Cherokee.  Interesting.


I haven't discussed stopping the plaquenil with doctor yet, not scheduled to see him again till June. I live 300 miles away from him. That's what I mean about this part of the country. I have seen lots of doctors, but no one is giving answers.


I am so upset with being told there is nothing that can be done about the belly issues except to stretch my esophagus. Had this done four times, it never last long.  

 

Don't want to come off like I'm sitting on the pity pot, have always been a fighter and won't give up. Will consider all advice. Please forgive my spelling and thank you all so much.

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Hi Cathey,

 

Interestingly, we had another forum member who was always told he was part Cherokee but it turned out he was actually part Choctaw. It's an easy enough thing to be confused about. So if you have access to any family geneological records, you might want to look deeper into it.

 

It really depends on what is causing your g.i. issues as to what can be done about it.  See our section on Scleroderma G.I. Involvement. My husband (who does not have scleroderma) had to have his esophagus stretched very regularly, almost like clockwork, for several years, and then suddenly it was fine and has stayed fine (for many years).

 

It was my understanding that it helps to have it repeated early on, and not wait until it is all-the-way bad again.  He drove cab back then, and he needed to have it done so often, and he didn't want to lose time off work, so he would refuse any meds for it and then just hop right back to work afterwards as though nothing had happened!  Odds are that I wouldn't dream of being so daring.  Either that or I just wouldn't ever be in such a hurry to get back to work. :emoticon-dont-know:

 

If you want to improve your appetite, to help compensate for the effects of scleroderma, there are medications that stimulate appetite, such as mirtazapine, which is an ancient (and thus cheap) antidepressant with a good safety profile. I have taken it for help with insomnia and I must say, unfortunately for me it has also worked exceptionally well for weight gain. In fact many meds have weight gain as a side effect so it is a fun thing to discuss with your primary care doctor.

 

Also be sure to have regular (at least annual) thyroid checks because there is frequent thyroid involvement with scleroderma. I think most of us tend to get Hashimoto's Thyroiditis (like me) but some of us get Grave's.  Hashimoto's is an under-active thyroid, which causes weight gain; Grave's is an over-active thyroid, which causes weight loss.  See Thyroid Involvement.

Those are just a few things you can handle with your primary care doctor, while you are busy tracking down a suitable scleroderma expert.

 

: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 Everyone,

 

After two weeks on the Meloxicam and still hearing "hurt Mom"  " pain pills" , the new rheumatologist took him off it and put him back on Plaquenil every day. He also said to try the extra strenght tylenol, 3 times a day, instead of limiting him to 2 times day.  I am always concerned about his liver numbers jumping too high. 

 

After the Rheumatologist visit , we were off to the new Pulmonary doctor  (all because of insurance change).  His lungs are stable - no interstitial progression -  which is weird since I never knew he had Interstitial lung issues?  His asthma has gotten worse over the past year, so now he's on Singulair every day, plus his inhaler. I was surprised to see "Mixed Connective tissue disease" on the Pul chart?!?!?  Is that really any different from Undifferentiated Connective TD ?   

 

On Monday, we hit the new Gastro doctor.....having fun, yet?!?!? 

 

Take care, Everyone.

Margaret

Mom to Gareth, 24 years old, DS/ASD

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Hi Margaret,

 

Thank you for the update!  I sure do hope that this new regimen helps reduce Gareth's pain to a more manageable level.

 

Yes, MCTD is substantially different from UCTD, although it is surprising how often they seem to be confused, or used interchangeably. It also depends on what records you are viewing, especially with electronic records.

 

Gareth's coder may have just settled for anything similar, matching the "connective tissue disease" and figuring it was close enough. But, that could have happened at his old office as well as his new one, meaning, he may have had a diagnosis of MCTD all along but the old office coded it as UCTD.

 

It's a very worthwhile thing to discuss with his pulmonary doctor (or any/all of them for that matter).  If his diagnosis is MCTD, then you would not ever be looking any further for diagnosis -- it is simply a done deal and it is not going to change, no matter how many symptoms of connective tissue diseases Gareth ever develops. But if he still officially has UCTD, then there is still the possibility that some more specific symptoms may develop and lead to a firmer diagnosis of any connective tissue disease, or MCTD.

 

: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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