Recently diagnosed in June. Been reading posts here... - NRAS

NRAS

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Recently diagnosed in June. Been reading posts here for a little while now and am glad to say I have joined for the support.

shannonpenny
shannonpenny

I have just started to feel the impact of the RA or what ever I have. The Dr says I have some type of connective tissue disorder. It could be RA or something else that just as not shown it''s bad face yet. That was her exact words. She started me on steroids for 4 months while the other medications started to work. She has put me on Relafin and Plaquimil. I hear it takes up to 4 to 6 months for it to take complete effect. I have been pretty good until this last week and my left wrist started hurting and swelling again. My right shoulder hurts down my arm and now my hips hurt at night and keep me awake. Everything I read says it mocks the other side but I have not found that to be completely true for me yet. I'm pretty scared for sure. I am on Lyrica for nerve pain in my neck, I don't know if it helps the RA or not. I was put on Tramadol, an anti- flaminatory (can't spell) but it messes up my stomach big time. I hate all of this and I am finding myself depressed. Gaining weight and unhappy from that too! Any advise for a newby?

11 Replies
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Have you thought about fibromyalgia as well as ra. I have both. I have ra down my right side as well as the fibro. i was diagnosed with fibro in august.. It is different in each person on how it hits them. The only thing i can say is we all suffer the pain in some degrees that range fron not much to downright crying with the pain. Like all the drugs we are given they do take time to start to work. You might be having a flare up and that might be the reason you are in pain so soon. See your dr or rheumy nurse and see what they say.

Sylvi.xx

Hi there,

RA is usually symmetrical so you get same on both sides of body. But it's a pesky disease that varies a lot from person to person so quite a few of us are non-symmetrical. Try not to be scared, it's a horrid disease if you do have it but there are a range of medicines that do work for most people. You don't say whether you're on a high dose of steroids or not, but if you do have RA it may well be exactly as Slyvi says & the RA is flaring a bit and you need to move to slightly stronger drugs. They do take a long term to take effect, but even so it sounds as if you need to go back to your doc and show her that you are seeing more of the bad face of RA.

And the weight gain is most likely a side effect of the steroids, so don't fret too much as will probably drop off again when you stop these pills. It's a hard disease to come to terms with, so my best advice for you is to try not to beat yourself up about everything and look after yourself instead. Try to rest as much as your life allows, and ask people for help when you need it. This is one of the worst times while you're in an undiagnosed limbo, so be nice to yourself. And you might find it helpful to talk to your GP about the emotional side, the Rheumy docs/nurses often concern themselves more with the physical symptoms and don't have time to talk about how rough you're feeling. Take care. Polly

Hi,

Polly has said all that I would have said. If your gp suspects RA I think you should see a rheumatologist sooner rather than later, as the sooner dmards are started the better chance you have of controlling damage to joints.

Mine started 4 years ago with shoulder pain, some was symetric, some was not, some showed external swelling, some pain did not. I think the visible inflammation is the least of our problems.

I would advise you to be pro active for set results. See specialist for proper diagnosis.

Kind regards, Gina.

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HI - I was diagnosed back in April with RA by my GP but he referred me straight away to the rheumatologist to confirm or rule out RA. I didn't get to see the consultant for 4 months though. Because my GP knew my history and saw my raised inflammatory markers plus positive rheumatoid factor and symptoms he was fairly sure that it was RA but would not have presumed to go beyond this. I therefore considered myself to be undiagnosed until about 6 weeks ago when i saw the rheumy for 2nd time and he said this was RA.

Maybe you mean Rheumatologist when you say Dr but it sounds like you are talking about your GP? If so GPs aren't qualified to make this diagnosis and you need to demand to see a rheumatologist asap. I'm a bit confused about what kind of Dr you mean though? If it hasn't "shown it's bad face yet" then how did you get referred to begin with? Although some people wake up one morning unable to move I believe RA more commonly progresses quite slowly and that's why it is hard to catch it early for many people but really important that is is caught too. I don't know about the drugs you are on but with me it usually hurts on one side more than the other but eventually it's equally bad on both sides - apart from hand pain which is always worse on the right hand side for obvious reasons, but still effects both 24/7 for me. Good luck and please push your medical team for answers and always try to show or photograph any visible inflammation you get. TT

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Things will improve.. and a firm diagnosis will help you know what you are dealing with. I hope things improve very soon for you xx

Tramadol is a powerful pain killer it is actually an opioid analgesic, it is not anti inflammatory pain killer.. these are things such as ibuprofen, naproxen, diclofenac to name a few.( your names may be slightly different especially the trade names for the anti inflammatories as I see you are from America.)

The steroids that you have been put on will help deal with inflammation and help calm things down whilst the plaquenil works xx

Maybe someone could do an american:british dictionary of things RA related? Do you have GPs (general practioners) and Rheumy docs (specialist consultant rheumotologists) or is there a different system? And I think some of the drug names are different too? P

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Hi Polly, Just came across your post here. I can answer:

Yes we have General Practitioners, though now they are titled "Family Practice Physicians"

Rheumatologists are Specialists in all of the Rheumatoid, Auto-immune diseases, such as RA, Psoriatic Arthritis, Osteoarthritis, Lupus, Sjogrens, Ankylosing Spondylitis, Schleroderma, Juvenile RA,..those are the most common ones.

The drugs are more known by the brand names here, though some are known as the Generic, like Methotrexate. Others are: MSAIDS

Tramadol is generic for Ultram, an Opiate pain killer, less addictive

Hydrocodone, Vicodin (acetominophen and Codeine ) for severe pain

Gabapentin, Neurontin (quiets nerves, thus reducing need for strong pain killers)

Tizanidine,: Zanaflex (muscle relaxant) Some of others you may recognize:

Ibuprofen : Advil, Motrin

morphine

Diclofenac,: Voltaren,Arthrotec,Cambia, Catalam,Zipsor

Indomethicin : Indocin, Indocin SR

Celocoxib: Celebrex

DMARDS:

Hydroxychloroquine sulfate : Plaquinil

Leflunomide: Arava

Methotrexate: Rheumatrex, Trexall

Minocycline: Minocin

Sulfasalazine : Azulfidine

BIOLOGICS:

Adalimumab: Humira

Certolizumab pegol : Cimzia

Etanercept: Enbrel

Golimumab: Simponi

Infliximab: Remicade

Rituximab: Rituxan

Anakinra: Kineret

Abatacept: Orencia

That's it! Got this directly from the current 2011 Drug Guide, from the Arthritis Foundation

Some interesting news: Research in various stages for other Bilogics, inluding tasocitinib, which inhibits Janus kinase, an enzyme crucial to the cell-signalling process that leads to the developemnt of White Blood Cells called T cells.

Currently in phase III clinical trials, the last phase before manufacturer submits the drug for approval by the Food and Drug Administration. Though approval is not eminent, the drug could potentially become the first Biologic taken orally.

note: Everything manufactured for human consumption must first be approved by the FDA.

:) This is your lesson for today!! Might want to keep this for references Loretta

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OOps I didn't list the Corticosteroids, but most are perscribed by generic name for insurance purposes.

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Thanks - especially for explaining the first bit Loretta about the family practice physicians - I didn't know this and it's interesting. Perhaps you could answer this question, from a very curious Brit? Does it feel as if the doctors in the U.S are very aware of your income bracket when they treat you and are motivated principally by money I wonder?

We are so used to the better doctors in Britain either being NHS (i.e free at the point of delivery) or working in the NHS and private practice too that I always feel that the purely private ones would be greedy and not caring. But I suppose if all doctors are working on the same premise of insurance this may not be the case? Also I know a dentist who went private because he wanted to be able to learn the latest dental technology with the best equipment availible and was frustrated by the lack of funds for decent equipment for him to improve his practice with. And now I have to pay for my dental treatment because it's impossible for me to get on the huge waiting list with NHS dental service here so I imagine it's quite similar?

What criteria do you use to choose your doctors - is there a handbook or a star rating system or is it just word of mouth/ personal recommendation? I admit I've felt a bit startled when I go on U.S RA/ arthritis forums to learn that people know exactly how many dollars they will have to pay for a specific drug and many seem to opt out of potentially important/ essential medication on the basis of cost and that's quite scary for me as a UK resident - but then again our doctors are making decisions re costs the whole time without us being aware of them which is also pretty scary I guess? Tilda x

Thank you all for the reply's. Loret your information is great! Being so new to this (6 months) I really didn't know what all I was and am taking and the classifications for each. Here in the US for me anyway we pay for insurance thru my husbands company. The Dr.s here for at least my family are not worried about cost. They will get paid by the insurance company if you are lucky to have it. Many do not. I pay a co-pay of an amount. It's different for regular GP's and for a Dr. who speciaize in a particular field. This goes for my dental and vision too. Usually preventative treatment like yearly checkups are free or cost only 20 to 25 dollars per visit. It saves the insurance companies money if they catch illnesses before they get out of hand.

Now I have another questions. At my last two yearly appts. on my blood work I had low platelets. Do you think this is a pre-curser for something? or should have flagged my GP sooner?

I really enjoy logging on and reading everyday. I'm so glad there is a site out there for us to communicate. Thanks to all. Penny

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I don't know what low platelets signify Penny - sorry! Sure others will help - you could maybe put it as a new question? I'm quite new to RA and lots of the things like DAS score and blood results aren't things I yet know or am even told by my doctors. I believe that when they test blood on MTX and other DMARD drugs they are looking for signs of liver function and white blood cell count but I don't know how these are read or whether high or low are good or bad - they just say they will tell me if there are any problems and they haven't phoned yet! You can do a lot of research online though if you are given the info from them to begin with. What kind of steroids are you on and how big is your dose?

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