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Post by scrappintoee on Feb 18, 2017 15:10:35 GMT
Hi, I'm going to a Rheumatologist for the first time next Friday, and although I'm looking forward to MAYBE getting a definitive diagnosis for my MANY pain issues, now, I'm getting skeeeered  I do NOT know if I have RA, Fibro, or anything else BESIDES osteoarthritis.....my regular doc is sending me to a "rheumy" to see what else might be going on. Aside from other, very painful joints---my THUMB has gotten SO painful at times, it feels BROKEN...it's HORRIBLE! Were you diagnosed easily, or did it take a few visits? Are you on meds that help? Did you have to try several different meds before you found one that worked? Are you doing OTHER things besides MEDS for your arthritis/ fibro/ etc? I've seen so many commercials for all the biologic meds out there, and of course----they have scary side effects!  I just met a man recently who has horrible hand pain like me, and he said he's been on different biologics that worked for a few years, then suddenly stopped, so his doc would put him on a new one. He's about to try a new one (I can't remember the name) and he was worried about the COST ($1,400.00 per dose!) and whether his insurance would cover it. I think he said it's an IV infusion--maybe once a month? I have a friend who suffered RA for many years, and was on methotrexate, which helped a lot. Once she became pregnant and was taken off the medication. After she had her baby and changed her diet to Paleo, she said she has been FINE and doesn't need ANY meds anymore!  Another friend has horrible fibro, and used to take Lyrica, which helped her a lot. But it no longer works for her, and since she can't take a lot of the other meds that are available, (for lots of complicated reasons)---she's just in pain all. the. time. I'd appreciate any info you'd like to share.....thanks in advance. |
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Post by gorgeouskid on Feb 18, 2017 16:20:02 GMT
RA is not a one shot diagnosis. My rheumatologist did a bunch of tests and gave a prelim dx of osteo. We treated me for osteo for about 18 months because I was reluctant to do a round of prednisone. Things got bad for me and I agreed to do prednisone for a couple of weeks. Boy, that helped so much, and she ended up giving me an RA diagnosis.
That really floored me, and I was so scared. My aunt had crippling RA and that's really all I knew. I imagined myself completely incapacitated. However, meds have come so far since then, and her joints had been destroyed way before the far superior meds were invented.
I'm on sulfasalazine and mobic now, and symptoms are fine. I've done a round of prednisone occasionally when I have a flare. I'm hesitating to go on anything stronger and can put up with my now-minor pain, because the next level of meds is methotrexate.
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Post by peasapie on Feb 18, 2017 16:21:12 GMT
I have several friends with lifelong RA. They tell me the meds are so much better now than years ago, and very helpful. Good luck to you!
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Post by scrappintoee on Feb 18, 2017 16:35:48 GMT
peasapie .....Thank you  And I'm glad your friends are doing well on their meds. gorgeouskid ....Thank you for sharing, and I hope your pain does NOT increase, and I'm so sorry about your aunt  May I ask why you're wary of POSSIBLY needing methotrexate in the future? Your med is not one I've heard of, so I googled: Sulfasalazine is a drug used in the treatment of rheumatoid arthritis and some other autoimmune conditions.
It helps with pain and swelling and also slows the progression of arthritis over time.
It should be held if there are signs or symptoms of an infection.
IF I actually have RA, it would be great to SLOW it down, too!
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Post by donna on Feb 18, 2017 16:40:58 GMT
scrappintoee I hope you find some answers for your pain. Constant pain is so draining. Hugs
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Post by mom2rjcr on Feb 18, 2017 16:46:20 GMT
I have arthritis and a multitude of other issues because of Lupus, so I see a rheumatologist too. I have to be care of many of the drugs I can take for my arthritis due to stomach issues stemming from my gastric sleeve. I do take cymbalta with really helps me with my nerve pain. I have used mobic in the past and it worked for me until my stomach decided it didn't like it anymore.
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Post by M~ on Feb 18, 2017 16:58:23 GMT
Hi, I'm going to a Rheumatologist for the first time next Friday, and although I'm looking forward to MAYBE getting a definitive diagnosis for my MANY pain issues, now, I'm getting skeeeered I do NOT know if I have RA, Fibro, or anything else BESIDES osteoarthritis.....my regular doc is sending me to a "rheumy" to see what else might be going on. Aside from other, very painful joints---my THUMB has gotten SO painful at times, it feels BROKEN...it's HORRIBLE! Were you diagnosed easily, or did it take a few visits? Are you on meds that help? Did you have to try several different meds before you found one that worked? Are you doing OTHER things besides MEDS for your arthritis/ fibro/ etc? I've seen so many commercials for all the biologic meds out there, and of course----they have scary side effects! I just met a man recently who has horrible hand pain like me, and he said he's been on different biologics that worked for a few years, then suddenly stopped, so his doc would put him on a new one. He's about to try a new one (I can't remember the name) and he was worried about the COST ($1,400.00 per dose!) and whether his insurance would cover it. I think he said it's an IV infusion--maybe once a month? I have a friend who suffered RA for many years, and was on methotrexate, which helped a lot. Once she became pregnant and was taken off the medication. After she had her baby and changed her diet to Paleo, she said she has been FINE and doesn't need ANY meds anymore! Another friend has horrible fibro, and used to take Lyrica, which helped her a lot. But it no longer works for her, and since she can't take a lot of the other meds that are available, (for lots of complicated reasons)---she's just in pain all. the. time. I'd appreciate any info you'd like to share.....thanks in advance. I was diagnosed with RA in 2011. Although in retrospect, I've been having symptoms for many man years. I luckily went to the top rheumatologist in my area and he did three rounds of tests before giving me the final diagnosis. He initially placed me in a clinical trial, in which I participated for five years. I've been in remission for about four years now. He says that if he did not know for a fact that I have RA a physical examination or lab work would not reveal RA. I take xeljanz twice daily. I very seldom get flare ups. I have no side effects from the meds. As as an aside, your friend is playing a very dangerous game. RA also affects internal body organs and there is no known cure for RA, especislly diet based. She may not experience symptoms but who knows what the disease process is. Good luck to you. |
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Post by beachbum on Feb 18, 2017 17:37:49 GMT
I've had RA since I was a teenager (I'm 60 now). Every new Dr. runs tests to make sure the diagnosis is correct - it is. I also have Hashimoto's Disease (another autoimmune disease, body tries to destroy thyroid), and recently have been diagnosed by my rheumatologist with Fibromyalgia, after months of suspicion on her part. A trifecta I don't want.
I tried Methotrexate, let's just say we did not play well together. It's basically a low dose of chemo, and it put me out of commission for 3 or 4 days a week. I tried it for 3 weeks and that was enough. I called my Dr. and said No thanks. She changed me to Leflunomide (name brand is Arava), no side effects and it works for me. She said the next step is a biologic - I say No thanks. I'm a big chicken when it comes to needles, and the thought of having to stick myself pretty much sends me over the edge. So I'll stick with this as long as possible, and then maybe something else will be available. I also take 200mg of Tramadol a day, I can't take NSAIDs anymore (had some issues with bad liver enzyme tests), and have hydrocodone for days that the Tramadol doesn't handle it.
I have a cyst in the lower joint in my right hand, dr. said it's probably a result of the RA. When it's flared up I can't use my thumb at all, can't pick anything up, it hurts all the time, feels broken. Pain pills didn't touch it. A friend of mine has an acupuncture clinic, and needle phobic me got talked into going to see him (that's how badly it hurt). One needle in my left foot and it was like a switch was flipped - no pain in my hand! I never expected that. That was a few months ago - I've had short periods of slight pain in there, but nothing like it was. Dr. says the cyst will stay there, nothing to do about it.
RA and Fribo are treatable and manageable, the key is finding the right dr. who will listen to you, not just give you a drug because that's the one everyone else is taking or that's the one the drug rep left samples of last week. If you don't feel like your dr. is paying attention to you find another one. Good luck, let us know what s/he says.
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Post by anniefb on Feb 18, 2017 18:23:34 GMT
I hope you get some answers scrappintoee. Constant pain is so debilitating. |
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Post by littlemama on Feb 18, 2017 18:49:37 GMT
I justmet a man recently who has horrible hand pain like me, and he said he'sbeen on different biologics that worked for a few years, then suddenly stopped,so his doc would put him on a new one. He's about to try a new one (I can'tremember the name) and he was worried about the COST ($1,400.00 per dose!) and whether his insurance would cover it. I think he said it's an IV infusion--maybeonce a month? Everyone's experiences with auto immune disease is different- your best bet is to tell the rheumatologist everything and listen to what she has to say. Ask lots of questions and make informed decisions. I quoted the passage above because the medication I am currently on costs $15,000 per treatment. That is not a typo (and it is for a different autoimmune disease). |
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Post by gorgeouskid on Feb 18, 2017 19:53:38 GMT
May I ask why you're wary of POSSIBLY needing methotrexate in the future? Methotrexate is a chemo drug. A side effect is hair loss (among other things) and I love my hair. Side effects of sulfasalazine are far fewer. |
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Post by FrozenPea on Feb 18, 2017 22:22:54 GMT
I have had RA for 14 years. I have been biologics almost from the beginning because I wanted to treat it aggressively. I did methotrexate for 10yrs before I could no longer handle it. My hair thinned, my brain was foggy & the feeling sick all the time especially towrds the end was too much.
I have been on plaquenil, Enbrel, Humria, Orencia, Xeljenz, MTX, vioxx, tremadol. Both Enbrel and Orencia worked for me. I was on Enbrel for 6 yrs and Orencia about 6 yrs. Enbrel just stopped working. After having surgery Orencia no longer worked. Humria did nothing for me at all & Xeljenz didn't work well enough.
I am now on Remicade ($15,000 per infusion) every 8 weeks after the loading doeses. I take it with Arava. It is working well and I feel the best that I have in 2 yrs.
As for the side effects of the biologics for me I feel they are worth it to have my quality of life. Without them I am unable to function.
When I was on Orencia after my neck surgery it stopped working. I could not get out of bed by myself. My husband would have to sit me up & help me stand. I needed a cane & him to get around. I could barely walk. I could not dress myself. I couldn't shower myself. I tried xeljanz & I could function most days on my own but my inflammation was very high & my pain was awful. I started Remicade in September 2016, after 2 doeses I felt the most normal I had in 2 yrs. I was able to get out of bed by myself with no pain.
I hated needles too but they are a necessary evil. I can give myself shots. And I no longer have a needle phobia. I get blood work every 3 months.
I do suggest taking someone with you to your appointment & have them take notes for you. My husband goes with me to all my RA appts. I also keep a health tracker & refer to it at my appts. because I tend to forget my pain days when I am feeling good.
I think the hardest part of this disease is learning to ask for help & knowing your limits.
Good luck at your appointment.
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basketdiva
Pearl Clutcher
Posts: 3,619 
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Post by basketdiva on Feb 19, 2017 0:09:21 GMT
i take plaquenil, a low dose of methotrexate and Humira injections. I sometimes take OTC pain relievers. I did have some issues with hair lists but lowering the dosage of methotrexate and taking biotin supplements have solved that problem.
Exercise is helpful for me. Keeping my joints active as long as possible is my goal.
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Post by scrapmaven on Feb 19, 2017 0:53:30 GMT
I am in remission from RSDS. Because of the RSDS I also have osteo-arthritis, peripheral neuropathy, Reynaud's and muscle atrophy. I was put into remission through electro-stim and refused all meds they tried to push.
A good rheumatologist will run all sorts of labs. Diagnosing auto-immune diseases is a bit more complicated. Don't let him throw a diagnosis at you until he's exhausted all options. Diagnosing some autoimmune diseases requires biopsy of lips or skin. Just make sure that you push for a thorough work up.
I'm sorry that you're suffering. I wish you complete answers and quick relief.
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Post by Delta Dawn on Feb 19, 2017 1:44:18 GMT
Hi, I'm going to a Rheumatologist for the first time next Friday, and although I'm looking forward to MAYBE getting a definitive diagnosis for my MANY pain issues, now, I'm getting skeeeered I do NOT know if I have RA, Fibro, or anything else BESIDES osteoarthritis.....my regular doc is sending me to a "rheumy" to see what else might be going on. Aside from other, very painful joints---my THUMB has gotten SO painful at times, it feels BROKEN...it's HORRIBLE! Were you diagnosed easily, or did it take a few visits? Are you on meds that help? Did you have to try several different meds before you found one that worked? Are you doing OTHER things besides MEDS for your arthritis/ fibro/ etc? I've seen so many commercials for all the biologic meds out there, and of course----they have scary side effects! I just met a man recently who has horrible hand pain like me, and he said he's been on different biologics that worked for a few years, then suddenly stopped, so his doc would put him on a new one. He's about to try a new one (I can't remember the name) and he was worried about the COST ($1,400.00 per dose!) and whether his insurance would cover it. I think he said it's an IV infusion--maybe once a month? I have a friend who suffered RA for many years, and was on methotrexate, which helped a lot. Once she became pregnant and was taken off the medication. After she had her baby and changed her diet to Paleo, she said she has been FINE and doesn't need ANY meds anymore! Another friend has horrible fibro, and used to take Lyrica, which helped her a lot. But it no longer works for her, and since she can't take a lot of the other meds that are available, (for lots of complicated reasons)---she's just in pain all. the. time. I'd appreciate any info you'd like to share.....thanks in advance. I get hip pain and hand pain. It's osteo or rheumatoid but not bad enough to treat. My GP orders me a Voltaren (Diclofenac) cream that is in lipoderm. It is so awesome. I used it on my left hip today and honestly, in 30 minutes that stupid aching pain was gone. My lower back today was mad at me, too, so I should have used it there too. The Dicloefenac is 10% and the OTC is .5%. I am positive it is 10% and it is seriously kick ass strong. You take the Rx to a compounding pharmacy and they make it for you there. It's expensive, but compared to what Americans pay for Rx drugs this might be cheap. I think it costs me $50 a container and it lasts a good 6 months. I have great success with it and can't recommend it highly enough. |
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Post by Delta Dawn on Feb 19, 2017 1:45:14 GMT
I can send you a picture of the bottle to show your doctor what it looks like. It is that good.
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J u l e e
Drama Llama
Posts: 6,531
Location: Cincinnati
Jun 28, 2014 2:50:47 GMT
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Post by J u l e e on Feb 19, 2017 2:42:30 GMT
I have been to three different rheumatologists over the last twenty five years. I have an unofficial diagnosis of undifferentiated connective tissue disease - basically meaning I have a lot of pain and a few symptoms from various autoimmune diseases but nothing that can be diagnosed definitively. Even with so so so many blood tests. And all kinds of medication. I have been through many stages of pain - from annoying pain that I can deal with to pain that makes it impossible to get out of bed and do normal things. With no answers and no relief.
Right now I have been feeling unusually good for an unusually long period of time - a few years! I find it hard to grip a pencil and write for any length of time, and I have a thumb that hurts so bad it feels broken at times as well. I have elbow and wrist pain if I do anything strenuous, but other than that everything seems manageable. So I am currently not on any medication and hoping this lasts and that I somehow made it past the bouts of crippling pain for good. I run and practice yoga. That seems to help.
I hope you find answers and something that works! With as little trial and error as possible. I'm sorry you're suffering.
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I do NOT know if I have RA, Fibro, or anything else
And I'm glad your friends are doing well on their meds. 
