RA so frustrating

I have been on methotrexate, Leflunomide, and sulfasalazine and my RA. Is still not controlled. I feel so fatigued, the side effects cramps in arms, swelling,cannot lift anything the pain is so bad and depressing. Does anyone know of a painkiller that would help the pain. It just seems like you have to get on with it, k

31 Replies

oldestnewest
  • I think we are all like that when I go to the consultant you always get the answer oh I don't think that's to do with the RA and I always reply well I didn't have this before I has raised so it must be connected or it's to do with the medication and they change the subject

  • That is all I get I come away so frustrated I don't know how we can find out what to do .

  • I take enbrel ( biologic), methotrexate 20 mg and arcoxia but for the pain I ask take tramadol and paracetamol - doesn't take away the pain but dies take the edge off. What anelgesia are you taking ?

  • How are you getting on with biologics do you find it better than the usual metho, etc. I have tried paracetamol,co condo mol,naproxen. But nothing seems to help, also get lots of cramps in arms.

  • I think the biologics help a bit with the swelling but Maybe not yet quite doing what they're meant to? I'm now about to go into my 3rd. The methotrexate I've been taking for maybe 14-16 weeks and they're going to increase it again. Unfortunately, I have a very aggressive condition and they're finding it difficult To get under control - maybe soon ?

    I was diagnosed in august 2014 and have had both hips replaced, both knees replaced, pins in all toes and feet and I'm due to have elbows done next - seems never ending !

    The tramadol and paracetamol work well together. I had many other painkillers before that didn't even take the edge off.

    It seems a long journey - I just to have faith that we will all get to a good place

    X

    Marie

  • Poor you. And there's me moaning. what mg tramadol do you take and how often. My thoughts are with you and hope you get some relief soon Val

  • Thanks val - I just remind myself there are worse things in life .

    They're 50 mg tabs and I take 8 per day. If things feel really bad, I have diazepam too but I try not to take that as I'm a social worker and find I just want to sleep when at work after a couple of those!

    I would speak to your gp about some anelgesia. I've always found the gp better at dealing with that as opposed to rheumatologist.

    Marie

  • Hi Marie

    You have all my sympathy - I can hardly believe anybody can get it so bad. There is another lady on her, also a social worker, Crashdoll, who has extremely severe RA. She is only about 28.

    I wonder if it because you both got it at an early age - I would think so.

    I also wonder whether it is because there was a delay in your initial treatment. I remember you saying that you did not see a rheumatologist for a year which is an awfully long time. I had to wait s six months for an NHS appt and I was told that the drugs may not work because of the delay and the toxic effect maybe worse than the condition itself. They have partially worked (on my shoulder but not my hands as there is now some joint damaage) but I would have done better if I had tried them sooner. I used electro acupuncture and Chinese herbal medicine at 9 months which relieved my symptoms tremendously.

    I had a bout of RA at 25 but apart from leaving me with damaged feet and being particularly stiff, I never got it again until 65. My mother had it at 30 and after six months treatment it never recurred though in later life she did develop serious heart disease, I think because of it.

  • Hi Ruffles - one thing not to do and I know it is hard is stress. I am learning with RA you have good and bad days. Christmas Day was awful for me - couldn't walk my feet where ouch 😬Had to put on my happy face otherwise my sister worries (my twin) and my kids! So I brave through it.

    Just want to reassure you you will get better - it's just a moment. I was like you a while back now so much better today.

    Check with your Rheumo team perhaps tomorrow or with a pharmacist what you can take.

    Have a nice warm bath, Epsom salts can be helpful as a good way to relax. Get a hot water bottle and try not focus too much on how you feel right - stress exasperates RA.

    Wishing you better - Hessie 😊

  • I try not to stress I see your a twin. My darling twin sister passed away last december we were so close lived near one another and cooked for each other holidays, we were both on our own I miss her so much. I never had a best friend she was it. Then I found out I had bladder cancer and have had treatment. It's been such a horrible time. I was diagnosed with RA about 2 years ago. And I suppose all the stress has made it worse. I am trying now to get on with my life. I just wish I could feel better health wise . I am seeing the rheumy at hospital on the 23rd January. But it's all waiting. They did talk about biologics but as I was having operation they wouldn't do it. What do you take for pain. Thankyou for your help and me moaning Ruffles

  • Feel free to moan....it seems u have had a lot on your plate....ask your rheumy for a biologic asap..........sometimes painkiller can't touch it......can you ask for short course of steroids in the mean time? It has helped me.....

  • I am sure a lot of this shrugging off by Dr's is to do with funding. I have worked through method hydra paracetamol pregballlin and amtripoline!!!! I am on leflunamide at present which just takes the edge off. I keep asking for biological but am told I do not qualify when I ask why I get fobbed off I am getting angrier by the day !!! Good luck

  • Hi Linda,

    To qualify for Biologics you have to have taken & failed to benefit from 3,Dmards & have a DAS score abovd 51.3 (think that's the figure) for 2 consecutive months.

    Ask your Rheumy what your DAS score is & keep asking. I was lucky..my Rheumy took the decision & last year I got funding for Biologics in 4 months.

    I agree with you ..... nine times out of ten it's a financial not clinical decision...but if you have only taken Leflunomide you'll need to try two more Dmards before you qualify .

    You never know you may find one that works for you. I was on .methotrexate very successfully forv 7 years before I had to stop because of side effects.

    Hope you get something sorted Soon!

  • Hi Linda. I was on methotrexate to start for a few months then had side effects. Then on Leflunomide now been on Sulfasalazine for about8 months. But not doing anything plus again side effects.

  • I am perfectly sure it is to do with funding. I also think that is why they flitarse around saying they can't make a diagnosis. I think they can but then they have to start spending money. The same goes for the waiting times for a first appt - if funding is not an issue, why do people have to wait such a long time.

    It makes me think that particularly when they prescribe Amitriptyline - it is an anti depressant and costs around £1/month and it has serious side effects on the eyesight. If it is not a funding issue, why not prescribe Seroxat, for instance, which used to cost around £40/month, and has no side effects. A lot of other anti depressants are more expensive but they do not have side effects. I would tell them to stuff it where the sun does not shine.

    I wonder when biologics will come off patent. They have been around for a few years now. The patent rights last 15 years. Once the patent has expired, they will be very cheap and everybody will be able to get them.

  • Unfortunately it's not as simple as waiting for the patent to expire.

    The ..NHS are now starting to allow something called Biosimilars to be prescribed...but it's not just a case of this person needs Biologics ....off we go.

    Research still has to be done on Biosimilars as they try to copy the originals.

    Not every Biologic is suitable...... Just because RTX suits one person doesn't mean it will suit the next.

    I would have preferred an injectable Biologic.....I thought it would be easier to manage than going in to hospital to have infusions.....but I'd had cancer & the injectable bios were not suitable for me,.....so along I went & had one 9 hr infusion &'two weeks later a 7hr one.

    My Rheumy nurse told me the Biosimilars are performing well, & as they are considerably cheaper the NHS will be using them as soon as each one is approved. Hopefully this will mean more people will be able to try them...because of course, like Dmards, they will not suit everyone.

  • It is that simple though. A biosimilar is just a copy of the biologic. The copy, ie biosimilar, can only be made once the biologic patent has expired.

    Further, most people cannot get biologics on cost, not medical, grounds.

    Having searched the internet, I doubt I will be taking either as I see they are made from animal sources. Whatever the level of misery, I don't believe it is ethical to torture animals and deprive them of their lives just so humans can have an easier life. I see some are made from bacterial and yeast sources - I would be fine with that and would be prepared to pay for a trial. The trouble with that, of course, is that if the trial improves your condition, you will then not qualify for NHS biologic or biosimilar treatment. You have to let yourself deteriorate to do that, apparently.

  • Unfortunately it's not simple at all, although from the literature it does sound as if quite a few Biologics are coming off patent in the near future......and I understand they will somehow be synthetic rather than animal......although I have'nt studied it closely.

    I was very wary of starting being treated with them, having scoured websites, many of which started with " this drug can cause death"but I think like most people when you have spent hours vomiting, being in agony & hardly being able to stand up you will try anything.

    I have only had two RTX infusions & have dates for two more in April....but if my blood tests at the end if this month don't come back with the right results I won't be able to have the second course.

    After nearly 18 years on this not so merry go round I don't know where I, or anyone else in the same position, can go if the Biologic they are treated with fails.....back to try Dmards again I guess?

    As for volunteering for drug trials....I'm sure I have read that if you do.....you would be guaranteed access to the drug once it's licensed, I'm afraid I wouldn't be that brave....if you live in UK you will remember a drug trial with some young students that hit the headlines because of very dangerous results.

  • No, I did not mean volunteering for a drug trial. I meant paying for the biologics myself for a limited period (eg 3 months) to see how I got on. That would be providing they are not from animal sources.

    There seems to be a high success rate with biologics and a lack of side effects. The DMARDS seem to be toxic and do not work a lot of the time.

  • To do that you would have to get it prescribed by a private consultant. Wouldn't you?

    That would mean private consultation, blood tests etc.,...the lead up alone would be well into the thousands.

    Also not everyone can have any Biologic....I wanted injections.....but past medical history made that impossible....so I had to have infusions, if I had wanted one not tested on animals that would have put another obstacle in the way.

    I wonder if 3 months would be long enough.....i'm waiting 4 months, thenbloodctrsts,,then another three months to get a second set of infusions. From what I can glean that will be around £10,000. The solution is quoted at £1,000 per 500ml. ...witout the other drugs included & the specialist nurses & doctors who administer it....that would be expensive privately.

    Even if you paid that you would probably still have to go back & get an NHS doctor to get funding to continue...I wonder if that is possible?

    I think NICE should have a big shakeup on what drugs can be prescribed on clinical not financial grounds...and judges should reconsider recent findings where they overturn Government Ruling.

  • I have actually already spent a few thousand ... on a private rheumatologist, physiotherapist, osteopath, electro acupuncture and Chinese herbal medicine. I still need to continue with the electro acupuncture and Chinese herbal medicine for my hands and it is not cheap (£45/month for the tablets, around the same now for the acupuncture). I used to pay more for patches and oils but my shoulders are OK now. I now have to get it by going abroad because the shop cannot import it into the UK any more under EU regulations as they need a £30,000 licence.

    I would not mind paying for an appt in order to get the biologics but I would not be going back. I would just like to try them for three months to see if they worked and whether there were any side effects. I somehow think it is all too late for them to work. If they did work, I would expect to be able to get them on the NHS. I don't know why it is that some people get them yet others do not. When nothing else works, what am I supposed to do, I wonder.

  • Have you spoken to,your private rheumatologist about your idea.maybe it is possible.However some Biologics infusions are made especially to an individual formula mixed for each patient.

    But three months would probably not be long enough..I have been told it could be a year before I know if I will continue to be on my drug.

    I think there are certain criteria in the condition of the RA factor in your blood beside DAS scoreb&'Dmardbhistorythat decide if you could benefit from Biologics...if that isn't there .....a rheumy would't prescribe them as they would not help.

    I do hope your.& everyone else who needs them can get the treatment.

  • You are so.right they say they gave me Antripoline for muscle spasms in my.neck and shoulders !!!! Sooo frustrating I think they think we are all thick. I feel like reading them their horescope and I am sure I will in Feb next appointment as I have had enough I am not improving take care and thanks for your replies xx

  • I agree with all that you have said. It is a horrible complaint. Very underestimated. My mum had it I never realised how painful and debilitating it was.

  • I think your right. The. Illogical are to expensive. They fob us off with cheap medicines for as long as they can

  • Sorry I can't help with pain, but I have found that magnesium helps sort my cramp and know others have as well.

  • When I could not get my Chinese herbal tablets, which relieve stiffness/disability plus pain and swelling, I tried Devil's Claw. Devil's Claw is featured on the Arthritis UK website. I would say it is about 70% effective for pain relief. I was allergic to it but the brand I tried contained a lot of chemicals. There are organic brands.

  • VOLTARIN 50 MG has great effect.

  • Yes, and it is a damn sight cheaper if you buy it abroad, which you can do without prescription. I have friends who do that.

  • Many thanks

  • I first want to extend you my good wishes and thoughts for your health status to improve. I myself went through a lot of pain and anguish trying to get ahead of the RA & Osteoarthritis. My RA Specialist and I went at it Hard. 20mg of Methotrexate, 400mg of Plaquenil and Humera injections for four months. It worked for me. The hard hitting combo of the Humera and Higher doses of Methotrexate started from diagnosis has made all the difference in the world for me. Now I am down to 18mg of Methotrexate, but I maintain the higher doses of Plaquenil 400mg a day. Like most here I have Fibromyalgia as well. For the Fibro and long term depression I take Cymbalta, 80mg. However, I also take cyclobenzaprine and oxycodone.

You may also like...