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WillHeal
New Member


Date Joined Oct 2010
Total Posts : 3
   Posted 10/18/2010 3:39 PM (GMT -6)   
Hi ,When I post and you respond asking for my info, do I reply to my original post or start from new as I have here. I am new to this and am not sure how to do this posting/responding stuff. I have had AS since 2004 and have been on various biologics and had some success. However, on remicade I develope anit-bodies and had to go off. Then I went on Humira and plaquinil and had good releif until last Nov. I deveolped severe bulrred vision and tingling down my left side. As I am sure most of you know the new worry with biologics is deveolping MS or other nerve condition. The eye thing really scared me and took months to clear up. I briefly tried simponi and had shortness of breath. I moved from  texas to New york two years ago and have trouble finding the right pain guy. I actually have an appointment in Jan with one I hear is very good. I am flying back to texas on Thursday to see my rhuematologist. I am currently on methrotexate and plaqunil. I stopped plaqunil for a couple months recently and the agony has come back! My vision was getting fuxzzy and I was worried about the possiblility of plaqunil effecting. I have an optic nuero appointment at the end of the month. I currently live in a small city and dr. availability is a problem. I am not handling this well as seem to get more depressed if I take oxycotin. Ironically , I have a 14 yr old pet pig with pretty severe arthritis His vet just came out and sedated him and injected his shoulder. She does a great job of manageing his pain. To bad she can't work on humans. For less severe pain I take norco 10/325 . I saw some wrote that they took nnuerontin, does it work for arthritis or just nueropathic pain?

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16396
   Posted 10/18/2010 4:13 PM (GMT -6)   
Hi Willheal and welcome to Healing Well's chronic pain forum. I don't believe I have met you before. To answer your question on posting, when someone responds to your post you operate off of your post. You do not need to start a new thread. The only time we start new threads is if we are starting a new topic.

I am so sorry to hear that you have AS. I know some people over on the crohns forum that have AS as that is often a spin off disease as a result of the crohns. Its so hard finding a medication that will last it seems like without either bad side effects or tolerance issues. I was on Remicade infusions for 3 1/2 years because of crohns, I developed Lupus from the Remicade and I am now on Humira which I like much better than Remicade. The convenience issue alone is worth it to me. I am not aware of the biologics having the potential of causing MS or any other nerve condition, is this something new? Where did you read this at, what web site? I would like for you to provide me with the info if you would, since I am on Humira this does interest me. I have done a lot of reading on these drugs but those conditions were never mentioned. Do you keep routine eye appts since you are on Placquenil? My rheumy insists that I do this.

I think the trend is going these days towards making it harder for people to find good pain mgt drs. There is just too much public hype out there and it is affecting the people that really need the help the most. That is terrible you cannot get an appt before January, thats just crazy. Is there not another larger city close by that you can maybe find another dr?

Anyway, I wanted to pop on and tell you welcome aboard and answer your question about posting. Take care and let us know how your dr appt goes.
Moderator Chronic Pain Forum

WillHeal
New Member


Date Joined Oct 2010
Total Posts : 3
   Posted 10/18/2010 5:51 PM (GMT -6)   
Hi, If you look on your package insert or the Humira website you will see that MS and optic Neuropathy have been added to the list of side effects. Sometimes they just state neurologicals problems. It is only been after the drug has been on the market for several years that this is coming up. My rheumatologist says he has seen 2 cases out of his 100's of patients. I loved humira, it worked great and then it happen to me. Sometimes it can clear up as with my cases after I stopped taking the drug

Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7153
   Posted 10/18/2010 6:24 PM (GMT -6)   
I take Neurontin for the nerve pain I have. In combnation with tramadol, I get almost total relief from the nerve pain. Also, have you ever had injections in joints that give you the most problems? I have had my SI joints injected three times in four years. That really helps reduce the inflammation and pain I have there from the AS inflammation.

I developed Lupus from Humira so I understand your concerns about the side effects.

I am so sorry that you have had difficulty finding physicians in your area. How horrible to have to fly part way across the country to see a doctor. My wonderful rheumy moved from WA to FL and there have been occasions when I have been tempted to fyl there to see him. My current rheumy is good but my former one used ultrasound to locate inflammed tendons and inject them to relieve my pain.
Moderator Crohn's disease and Irritable Bowel Forums

CD, Ankylosing Spondylitis, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, pulmonary hypertension, degenerative disc disease, asthma, severe allergy and a host of other medical problems.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16396
   Posted 10/18/2010 7:56 PM (GMT -6)   
Willheal thanks so much for the heads up on Humira I will look on my packaging. I know when my rheumy wanted to put me on Plaquenil I was sent to an opthamologist prior to starting it. He explained the odds as being low for the eye issue. Even though I am on Humira he feels I need to stay on Placquenil because of what happened with Remicade. I think that is pretty low odds for the MS so I am not going to stop Humira, lol. It has helped my crohns much better than Remicade.

Take care.
Moderator Chronic Pain Forum

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9664
   Posted 10/18/2010 10:54 PM (GMT -6)   
Willheal Don't worry about the posting you'll get the hang of it...
Yes it is hard to find a good PM doc. and it might even get harder.
Seems like we missed each other I moved from Michigan to Texas.
I like the south no snow, I don't miss the snow. If you have any questions about
your medications always ask your doctor sometimes the risks are small compared to
the relief you might get. I hope you can get a low pain day soon
(((((((((((((((((((((((((((((Healing Hugz)))))))))))))))))))))))))))))))))))))
Neurnontin I believe is for nerve pain.
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* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc (Lower Lumbar S1-L3 and Cervical C5,C6, C8 and T1), Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's, Ocular Migraines, mild carpel tunnel, ect.... "Would be nice if we could use the edit button in real life"...

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