Concerns about Drugs

[DesignerS]

Hi everyone,
Just a quick question.  How concerned are some of you about the side effects of the drugs you are taking?  My Rheum dr. keeps telling me that the drugs are too dangerous to take and doesn't want to give me anything.  Are they that bad?  I have done research, but you know how that goes, always worst case scenario.

Thanks
Designer

[JannaLee]

I think it's a trade off, but my doc. begged me to go on Plaquenil telling me it's an old drug that is pretty safe as long as you keep a watch out for adverse effect. 

If I were you, I'd get another opinion to prove/disprove his treatment decisions.

Janna

[Katybarstool]

Hi Designer

I understand the fear of taking drugs in case of side effects. My rheumatolologist decided I needed Celebrex, as I was in terrible pain and the NSAIDs triggered my asthma. Anyway, it took me a couple of months to finally try the Celebrex, as I was really frightened of upsetting the chest - thank God I did, it was wonderful to become pain free. I've not needed any of the really serious drugs, but I have worried about taking hrt/antihistamines and amitriptyline because of my previous history of epilepsy (many years ago), yet on balance I decided to take them, as I need to be able to get on with life.    

I think the only thing any of us can do is balance benefits and risks and hope for the best.

Kathys

[Scottietottie]

Hi Designer 

I'm out for quality of life rather than quantity of life! So saying - I'm in my mid fifties. I don't function well when I'm in pain so I'll do pretty well anything to minimise that.
I wouldn't take a drug that made me feel sick - but as long as one doesn't - I'll take it until it does!! Plaquenil makes some people nauseous but I tolerate it fine, so I take it. I've never been offered any of the 'heavy duty' steroids.

Take care - Scottie 

[Patze]

Hi Designer,

My rheumy also begged me to try it being concerned as to why my SED rate just jumped, and there was no easy answer.  Am I afraid of taking all of these drugs?  Yep, but I also know that I wouldn't have any quality of life if I were still in that sheer exhausted/brain fogged place; I'd rather take that risk, then stay were I was.  I'm with Scottie, the quality of life is so much more important than possible side effects (within reason that is! ).

Take care -

Patze

[DesignerS]

So Patze,
The meds you are on actually help with the fatigue/brain fog?  I thought maybe I was depressed and have been blaming the forgetfulness and inability to focus on age, 52. 
I am actually getting a little scared about my memory.  One week ago I threw away my birthday card with tickets in it to go to a concert.  I know that can be normal, but its not like me at all.  My family is noticing it so much too.  Getting more than a little embarrassed about the whole thing. 

Designer

[JannaLee]

I am experiencing the same thing, Designer.

I've noticed it for the last several years, but now my family does too.

Plaquenil has helped me with nausea, joint/muscle pain, and fatigue....but I don't think my memory/thinking has improved.  This is the scariest part of it.

I'm going to try SAM-e on low dose (as soon as I get to town to shop) because others here have found it helps them.

I'll post about it in a couple weeks.

Janna

[Scottietottie]

Hi Designer 

Please make sure your thyroid is OK. Also - ask for copies of your blood results. If your TSH is at the top end of the normal range - that could still make you feel ill. Deep depression and severe brain-fog are classic hypothyroid symptoms and docs often brush them off as 'time of life events'. Do check it out.

Take care - Scottie 

[Jesse88]

Your question is one I've agonized over and over again.  The thought of being on these toxic drugs for the rest of my life truly frightens me.  But the truth is, I have no choice.  I don't know for sure there will be any long term problems from the drugs, but I do know for sure there will be many problems if I don't get and keep my disease under control.  So in a nutshell, it's weighing the risk vs. benefit for each of us.  If my disease was mild and not progressing, I would hesitate to take any medication with the potential for harm in the long run. 

I hope this helps.  I understand so well the concerns you have. 

[DesignerS]

I can see this has been a really tough decision for many of you.  It breaks my heart that you have to choose between quality of life and possible risks.  Until safer drugs are found I guess we do what we need to do. 
Hang in there everyone! 

Designer

[Patze]

Hi DesignerS,

I understand your fear, I've been there and it still sometimes make me wonder...hang in there, it does get better.

About the brain fog, oh yes, I'm having issues with it again and I sure know about the embarrassment of it all.  I know that my TSH is under 1.00 so that's good, but I have no idea why it's become an issue for me again.  I did ask the neuro, but he didn't seem interested; too bad, as it's a big deal for me as I still have to work and pay the doctor bills!  On to find a new neuro.

Hopefully your doctor will figure out why it's occurring for you soon!


Patze

[Nathan]

I've been there, heck I'm there right now. I'm recovering from an ulcer caused by my NSAID use. I guess my rheumy gave me an old one that can cause serious stomach issues.
I've found, it's better to try and have a few issues and keep trying until my docs get it right. It's probably the only reason why I'm not completely miserable right now.

[Chana M]

Nathan - Sorry to hear about the ulcer. Which NSAIDs were you on?  Has the rheumy moved you to a different sort of pain relief? 

I love the notion of not being 'completely miserable' right now.  Is this on a scale of 1-10?  Or a percentage?  Maybe we could invent our own measure for misery?!

Chana x

[Nathan]

I was on Etodolac (Lodine). It was weird because it sort of came out of the blue, I dont have stomach problems with hardly anything.
I haven't called my rheumy yet, but I need to.

I like the idea, we need a new scale hah

[missyb]

Oh yes, this was really getting scary for me. I was on Imuran for 3 years for a non specific autoimmune condition.. I had constant pain in the kidney area, and also in the area of my liver.I was very concerned about what it might doing to my organs    I knew when I was given the imuran that it has a lot of side effects, which included lymph cancer, last year my closest brother had lymphoma  , so that made me even more nervous. But when I was given a firm diagnosis of sjogrens, I had to get off that stuff because of the increased risk of lymphoma of just having sjogren's! So I am off the imuran and on minocin, and doing well with it.