Hi everyone new to this board.. I was just dx'd with fibro and ankylosing spondylitis (possibly IBD spondylitis) from my new Rhuemy Dr. So i was told i had a lot of research to do and some discisions to make. Does anyone know of a good site i can check out? I have been to some sites but i didnt find enough info from them. Or can anyone share there stories and what all they have been thru. I can not take the NSAIDS or Prednisones due to allergies and stomache problems..So that just leads to the more potent drugs. They seem to have alot more side effects then cures...Only allowable sites will be ok. Thanks Pam

Welcome aboard.
You might want to try the newer anti-imflamtories such as Bextra, Celebrex or Mobic. They affect the stomache very little and if they still are bothersome you can take stomache medication. I have the same problem as you but have found I have very few problems with Mobic other than some heartburn that is taken care of by prescription stomache medication. The older medications I can not take at all they cause severe stomache pains and bleeds.

Before you rush off and take more potent drugs you need to realize they are going to affect your stomache in the same way the new COx inhibiters do, if not worse. Further more most doctors will not prescribe strong pain medication until you have gone the route of standard approaches. They will not be doing you any favors to rush to put you on narcotics which will lead to dependance a lot quicker and will require you to take stronger medications earlier than you probably should.

Some of the things you should be looking into is phsyical therapy to see if that helps any. For the FMS you should be on an antidepressant to sleep at night, this is the most common medication prescribed because it helps you to get a deeper sleep.
Other more natural approaches are advised such as biofeedback, TENs units, meditation, gentle water therapy/aquatics, massages and various other forms of non evasive methods. These do help a lot, not all will work for you, some may, some may not so you take what you can that does help and go with it.

Many of the Pain management doctors as well as many rhuemys also suggest you seek out pscyological services. This doesn't mean you are crazy or severely depressed by any means at all. Basically if you find a good psychologist or psychiatrist who specialises or has knowledge of pain management you are going to learn a lot of various methods in coping with your pain and issues that arise.

There are a few good FMS sites out there you just have to search. A good place to really start is with the Arthritis Associations web site. They have some decent information as well as water aquatics available and support groups in most areas. It's definately worth a try to look into these things.

Good luck and welcome aboard.

If you have the time, energy, and health check out all your options. I know that just being diagnosed myself with RA I am not shutting the doors on everything else but Western Medicine. I went to a Chinese medicine doctor and will be going to see someone in homeopathy. In the meantime I did have to turn to drugs because of the pain.

I too have a very sensitive stomach (no allergies thankfully). So for awhile we considered trying the shot route. But first we have decided to just start me off with an extremely low amount and stretching the dosage times out to see how my stomach takes it. So far so good! So much of it is mental...if you believe it might hurt your stomach--odds are it will. Not to say that it doesn't really bother your stomach...trust me I know!

I tried Vioxx...anti-inflammitory and it hurt my stomach. I am on Biaxtra (sp?) and so far no problems. I am also on a low, low, dose of steriods that I take at two seperate times a day.

Like someone said, usually the more potant drugs you get into the rougher they are on your stomach. But look into everything....research all the drugs. Get more than one opnion. See if shots are an option!

You have to be careful with steriodal injections. You should never have more than 3 in a given years period. They do cause muscle loss and deteriorate your cartilage at a rapid rate. They can often times be more damaging than the disease itself. Never get shots in your spinal cord anywhere if you can really avoid that. The manufacturers even state on their MSDS sheets that they are NOT intended for sacrial joints but doctors continue to use them dispite the warnings.

Oral steriods also carry a huge set of ill side effects so be careful with them and get your kidneys checked often. If you ever show signs of acute onset of pain in your primary joints (shoulder and hip) you need to see a doctor immediately if it does not go away and is very acute. It can be aventricular necrosis (not sure if that's spelled right). AVN is a result of steriods where the blood supply gets killed to the bone, it is awfully painful and there is no cure for it. Doctors do not tell you about this nor is it on your pharmacy sheets.
Never stop steriods on your own you can cause a heart attack even at a low dosage. You need to taper off if you ever need to go off them.

Thanks for the replies. I have a history of PUD, GERD, N/V,IBS,and some other things that make NSAIDS & prednisones not a option. All of these things have been covered by the rheumy. So he thinks inorder to start tx, he thinks i should do the 3rd stage of meds. (mex, remicade, humera, Pleru???) Had to talk med option with GP dr and now i have to talk to eye dr also. I have been having alot of eye infections and some of the meds can cause blindness. Liver damage also. But i still have alot of research to do before we all make the right tx.

Hi everyone new to this board.. I was just dx'd with fibro and ankylosing spondylitis (possibly IBD spondylitis) from my new Rhuemy Dr. So i was told i had a lot of research to do and some discisions to make. Does anyone know of a good site i can check out? I have been to some sites but i didnt find enough info from them. Or can anyone share there stories and what all they have been thru. I can not take the NSAIDS or Prednisones due to allergies and stomache problems..So that just leads to the more potent drugs. They seem to have alot more side effects then cures...Only allowable sites will be ok. Thanks Pam

Hey Pam:
Welcome, I have AS and overlapping Psoriatic Arthritis. Fibro with either of these is not uncommon.

To answer your ?. Check out Spondylitis.org and also kickas.org. They are both great sites and you will get more info. than you can absorb.

Best of luck,
"BROKE DOWN, BUSTED UP AND OUTTA GAS"
Al

Hi Country gal,

Well, I am sure your doctor told you but you will be taking one of the third classes of drugs they use to treat arthritis problems (I can only say my did on RA anyway). The way I was informed was that (all depending on your medical situation) for me personally an anti-inflamitory alone would not do the trick. Not to help right now or in the future. We tried it and it did nothing. But that doesn't mean it doesn't help. So to help with the pain right now I am on a steriod. But to help with the overall pain and to prevent joint deteriation (sp?) I am on the NSAIDS.

I think I told you I have a sensitive stomach so that eliminated some right off the bat for me. It came down to Plaqunil (sp?) and Methotrexate. And yes, there are some very serious side effects. All medication needs to be monitored closely. After doing a lot of researching and talking to others, reading this board....I chose Metho. Almost 2 1/2 weeks now I have been on it. So far no problems. I go in for the blood work in a couple of weeks! Do your research.

Many drugs have side effects but not being on anything has it's own effects as well. Do research.....in all feilds of medicine if you want!

Take care and good luck:)

Thanks for the responses. I am doing alot of reading and researching, but am also thinking of going to walmart for their print out also. From what i have found so far im not thinking this is a very good start for the 3rd class AS meds. But have had some NSAIDS and Prednisones from past problems and was unable to use. Sometimes the reactions are as bad as the DX. It makes me wonder which is going to be worse. From what i have read once you start meds you usually have to take from now on.. But that doesnt seem like a encouraging outcome. Gee, just when i thought i could handle the FMS and all the other problems here this has showed its UGLY face... Then i wonder when or if it will ever end. Sorry to ramble on, just got carried away.... Best to all..... Pam