Just been to the dentist to see if there was any link with a crown I had done not too long before I started have bad pain everywhere including my jaw
my dentist doesn't agree the jaw pain is linked to RD he said that's ost arthritis
but when I first saw Rheumatologist he said that was linked to RD
you get jaw pain with RD.
when I first saw Rheumatologist I was in a state of shock what it was so didn't ask to many questions,he gave me 3 leaflets on 3 drugs the M one, the H one and the S one to choose which one, although he wanted to start the M one, second time a week later I saw him for a scan, he said there was no talking no time and told me it was hundred % RD the most serious form. and I told him if I have to take one of the Drugs I wanted the S one rather than other two, he didn't think it would work but agreed
I am due back tomorrow as I took myself off the S one as I couldn't breath
my symptoms at the moment isn't too painful, a few slight flutters in my toes-feet and few in my fingers now and again but not as bad as it was.
so I am feeling a bit lost and not wanting to have to choose another drug tomorrow
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VeronicaF
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I am sorry you feel so anxious about which drugs to take. Given that nobody is certain what will work for whom, and who will have side effects and who will have none, could you ask for guidance from the Rheum clinic which to try next? It would be great if it was clear cut, but it really isn't. most people on here know much more about it than me, but I am responding incase lots of people have had a early night now the weather is cooler. Best wishes.
Maybe your rheumatologist was right about the M drug?
I took it for 7 blissful years.......& after 20 years of RA I I have no regrets.
I trust my doctor & take what he recommends & argue afterwards if it goes pear shaped.
Do remember..... the horror strories you read about any RA drug are the experience of the writer & are very unlikely to happen to the reader. Unfortunately getting the right RA drug isn't an exact science ....it takes time to get the magic mix,
Let's hope the next drug you try has a better outcome....maybe you should listen to your doctor this time....he really does want to help you, but he can't do that if you don't take his advice, can he?
All I can say is I have baby fine hair & didn't lose a strand in 7 years.
I obviously don't know for sure, but it seems if you get lung problems on the M drug, you might have had a tendency pulmonary illnesses prior to diagnosis.
I felt I should go for it & get RA under control,ASAP. Once your joints are damaged you have less chance of being completely painfree & getting on with your life.
Being a devout coward I took the meds & so far I think I'm as well as I can be after 20 years of meds ....my aches & pains still come & go..but I'm very glad I didn't hang about when I was first diagnosed.
Hi Veronica, it's so hard accepting you have ra and the drugs that go along with treating it. I think we've all travelled this same road along the way. For what it's worth methotrexate is a wonderful drug if it works for you. You get monitored clòsely while on it and if it doesn't work out you can come off it. It really can make a massive difference to your quality of life and slow down your disease.
I'm with your rheumatologist on the subject of jaw pain. When my disease is not controlled properly I get terrible tightness and pain in my jaw. I know it bad when I can't eat my crumpets...nothing usually stops me eating them!
Best of luck with whatever decision you make. Try to trust your rheumatologist as they really can do wonderful things x
Don't ask your rheumatologist to fill your teeth, and don't ask your dentist to treat your RA..... in other words your rheumatologist is better placed to advise you about whether or not the pain in your jaw is OA or RA.
Methotrexate is my best friend. I have been on it for 8 years without problems and it has given me my life back. I have a long history of getting lung problems, but have not had so much as a cough on MTX. You can read all the lists of possible things that might happen, but it doesn't mean it will happen to you.
Driving a car can be dangerous, and bad accidents can happen, but if you need to drive a car you still do it....
Ive been on mtx for 18months then sulph then hydroxy plus other things all at once. I have had some side affects, but they are settled now and I still get RD issues but am so much better than I was. I trusted what rheumy suggested. I know its hard and some people dont have a positive experience on meds, but all I can say is its helped me to function better than without.
I wish you all the best and hope you end up settled with the outcome of your appointment.
I'm not surprised you are anxious about the drugs on offer. This whole nasty disease can read like a horror story but we have to remember than good news is no news. People who thrive on the M one, the S one or the H one are far too busy living full and active lives to post on this forum save for a few angels who are kind enough to share their vast knowledge and experience. Like you, it's taken ages to get my head round the fact that I had RD and to be honest still not quite there. I've been on the M one for over 18 months now and did have some hair loss in the beginning. It's very fine hair and it did thin a little but back to normal now. I had visions of having wigs for each day of the week, purple on Sundays, but it never got too bad. I lost more hair after my son was born! Your rheumy has your best interests at heart, huge experience and lengthy training. I'd trust him/her in your position. Wishing you well
Hi I've been on Methotrexate for over 2 years. I have hair loss but not noticeably so and nausea on days around injections. I've tried sulfa and leflunomide and failed on both re side effects and I'm now trying out hydroxy for size (1week in) no real issues yet suppressed my appetite a bit but ok.
I've kept with methotrexate even though some nausea as the trade of is my arm, wrist and hands are still swollen but no longer resemble the elephant man! Fair trade off for me! M x
I had extreme hair loss with MTx BUT it was is very rare and my RA consultant was shocked and it was stopped that day. It did grow back, so no real harm done and I was advised that I was simply hyper sensative to it. The next drog was LEFludamide and it changed my life back to normal in a few months. So my message is just give it a go, hair regrows and if it works for you then super if not it'll be onto another one. Really its about risk and the potential for damage to your joints etc. I'd add RA isn't just about swelling and pain as if affects my blood, and yes I do have some lung problems but that is not because of the RA but because I have other auto immune conditions.
Listen to what everyone says about following the doctor’s advice. They have studied long and many have much experience with patients like us. Sometimes you have to stay on the drugs for a time to give them a chance to work and to give your body a chance to adjust. Don’t be so quick to give up. I was on the S drug for several years and it brought much relief.
Also just a word about the dental work, it is possible that it threw you into a flare even though it’s not RD related. Any procedure I have done, has the potential to do it to me. My body hates intrusions including dental work and vaccines.
Remember it’s not just about the pain, but the damage being done inside that we can’t see. Good luck on your journey.
Dentist is mistaken. RA can effect the jaw as well. Here's a link to information on it
I just wanted to say that before I had the perforation in the intestine, methotrexate worked very well for me. I also have ibd and diverticulitis. I cant say that the perforation would have happened anyway because of this. There is a lot of negatives that go along with all the different meds. But you just have to pray for the tight choice and go with it. The disease also attacks organs and tissue so you really need to stop it. Good luck, listen to your rheumy
Thank you everyone for being so very kind, I saw another reuma today a woman who sat and answered my questions, she also offered me another Drug called Leflunomide and gave me a leaflet on it.
never got offered that one before
I said I needed a bit of time to start another one and she gave me the 48 hour phone line I never got before, so if Iam ready before I see them next to start another one I can, but have been given a bit of space. but know they are there when I am ready to decide which one to try next.
so now I need ifo on this Leflunomide how people did on it please?
Me ! for years now and it worked extremly well but my RD is getting much more aggresive so may have no choice but to go to the next step. It's still working but can't hold it back now. At first to be honest it hurt worse but then like magic ( I mean that) I woke up all fatigue and swelling and stiffness had just gone. A great medication for me with no side effects at all after the initial pain. Don't be frightened of it, as whilst it is true it stays in the body a long time in an emergancy it can be washed out with another medication.Do not be put off if it works you can acheive like me a normal life and do whatever you want just like before diagnosis. Actually before diagnosis I thought I was going to die as to feel that bad it had to be something really bad and so once the LEF worked it was great to do all the noraml things, swim, ramble etc. Even now its helping me just not as well as it used too. I'm sad about that, but can only look forward to a new medication and more energy and less aches.
I'm complcated as my RD consultant said as he has to talk to my Respiritory Consultant ! but I prefer the term "interesting" lol before I know whats next so really am glad at least you know whats next. Take the LEF at night and with a large glass of water so it goes right down as it tastes bad if it gets stuck!!
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I think that yesturday was the end of the line regarding my anti TNF appeal....but there was more news to come!
Please can someone help me or give me advice I am desperate.
Mtx & periodontal disease
JAW REPLACEMENTS
Does anyone else feel like they are swimming through treacle in order to get the right treatment for ra
