CF related arthritis and bad joint pain

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BreatheLife

New member
Hello there,

I've been having a lot of pain in my joints and when I saw my cf doctor me prescribed me this med Plaquenil, generic name hydroxychloroquine, to help with it. When I picked it up at the pharmacy today the pharmacist gave me a concerned look and told me its a stong medication. This made me a bit worried about taking it, so I read up on it and it is used to treat malaria, lupus and rheumatoid arthritis. It seems to have some pretty bad side effects associated with taking it and I am nervous about starting it.

Have any of you been on this for CF related arthritis? Did it help your joint pain at all? Also, did you experience any bad side effects with it or did you tolerate it pretty well?

Any response about this med or any other meds you have found to be helpful as far as your CF related arthritis goes would be greatly appreciated.

Thanks so much!
 
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kmaried

New member
Hey Kristi,

I have been on plaquenil since 2006. What is your dosage? I took 200 mg twice a day for a few years, and am now down to taking it once a day. The biggest thing about this med is it can cause you to lose your peripheral vision... so I have to get my eyes checked every 6 months... just so if there is any decrease in my peripheral vision, I can stop the med. I haven't had any problem though, in four years.

Good luck - I hope this helps you -- It def helped me!! <img src="i/expressions/face-icon-small-smile.gif" border="0"> I had bad flare-ups and although I still get them, they are less severe and less frequent. I would've lost my mind if it wasn't for plaquenil!!

Kris
 
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kmaried

New member
One other thing...

The CFF has plaquenil (hydroxychloroquine) in their drug development pipeline under the anti-inflammatory section. So, maybe it will have an additional benefit for your lungs!

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/research/DrugDevelopmentPipeline/">http://www.cff.org/research/DrugDevelopmentPipeline/</a>
 
B

bobanny

New member
I was prescribed some various arthritis meds when they finally diagnosed my CF. None seemed to work very well (this was 3 years ago, though)...meaning I still had pain some days.

What did help and has continued to help is a high quality, pharmaceutical grade vitamin supplement. I do want to encourage you to look into the Usana HealthPak 100. It has been able to keep my pain thoroughly under control as it has a high amount of anti-inflammatory ingredients (contains the "Essentials"). From their website:

Usana Essentialstm is far more than a just multivitamin as it delivers all 13 vitamins, 12 minerals; trace minerals and over 20 different antioxidants.

I can tell from my experience that taking vitamin supplements is more beneficial than medication as there are not side effects to deal with. <img src="i/expressions/face-icon-small-smile.gif" border="0">

If you want more information, I can send you more info. Either reply here or PM me.

Hope it helps!
 
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BreatheLife

New member
Kris,

Thanks so much for responding about your experience with Plaquenil and for the link. I have a lot of problems with asthma and inflammation in my lungs, so it would be wonderful if this med could help with that too.

It makes me happy to hear that this med has been of benefit to you!

Best,
Kristi
 
M

MiddleAgedLady

Guest
Kristi,

I have been on Plaquenil (the generic form) for 3 or 4 years. I take 200 mg twice a day. It does help me. (I hurt all the time.) I haven't had any side effects but my rheumatologist does require I get my eyes checked every six months also.

My lab work is screwy -- it's about a click away from being Lupus. I'm beginning to think other CFers have the same thing. Ask your dr if he tested your ANA (antinuclear antibodies). If that is positive with a high titre, you have an unspecified connective tissue disease.

I stopped the drug once because i was out of it and wondered if I even needed it. About two weeks later I was so miserable. I won't make that mistake again!

Best of luck to you. And seriously, if you look at the side effects of all the OTHER medicines we have to take, this one may be kinda tame. :)
Joan
 
L

leojoshrun

New member
Hi breathelife,
I found this while "googling" that many people prefer using naproxen and paracetamol. I don't know how good it works but just suggesting[FONT=Arial, Helvetica, sans-serif].

Thanks
Leo[/FONT]
 
B

Beccamom

New member
I sent a PM with my daughter's story, I am most interested in any information about the CF and connective tissue disease connection. Any advice about how to avoid a flare?

MiddleAgedLady said:
Kristi,

I have been on Plaquenil (the generic form) for 3 or 4 years. I take 200 mg twice a day. It does help me. (I hurt all the time.) I haven't had any side effects but my rheumatologist does require I get my eyes checked every six months also.

My lab work is screwy -- it's about a click away from being Lupus. I'm beginning to think other CFers have the same thing. Ask your dr if he tested your ANA (antinuclear antibodies). If that is positive with a high titre, you have an unspecified connective tissue disease.

I stopped the drug once because i was out of it and wondered if I even needed it. About two weeks later I was so miserable. I won't make that mistake again!

Best of luck to you. And seriously, if you look at the side effects of all the OTHER medicines we have to take, this one may be kinda tame. :)
Joan
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