I'm a newbie here

Hello all. I need a little advice and support, because I feel like I'm at the end of my tether. Just under three years ago I was given a diagnosis of PMR as I had awoken one morning with joint stiffness from head to toe. I responded very well to a high dose (30mg) of pred, but relapsed as soon as any reduction took place. I was then sent to a rheumatologist who, after a barrage of tests, concluded that I had seronegative arthritis and probably pmr too. So started the long regime of drug treatments. First sulfasalazine, then mtx, and I am now on leflunamide 20mg, all whilst trying to reduce the pred. The leflunamide is the only one that has let me get down to 10mg, but when I tried 9.5mg for two weeks I've had the mother of all flares. Right before Christmas. Right before starting back to work after 14 years in the New Year. I spoke with my rheumy nurse and they have suggested I go onto hydroxychloroquine, so I have an education appointment on the 28th. I have also been allowed to go back up to 10mg of pred. I also take two co-codamol at night (can't handle any more than 3 a day). I'm so stiff and sore at the moment - this is the first time it's actuakly reduced me to tears. I rub voltarol into my joints, tiger balm, use tens machines (lumbar, shoulders and knees) but nothing seems to be touching this constant pain at the moment. If anybody could give me any advice on hiw to get a little relief I'd be so grateful. Also, are any of you on the leflunamide/hydroxychloroquine comb? Many, many thanks

13 Replies

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  • Hiya me me I am !!!!

    I sound similar to you had extreme quick pain and it's taking a bit to control . Methotecste didn't suit me and I got sulphasalasine which I find really helps my swelling a lot . Doc added hydro a few weeks ago and I had to take it at night as it made me feel queasy but it passed after a few days , then it got increased. So joints feeling better a bit ( I'm waiting to start a new biological in January ) and sane as you can't seem to get off steroid but got it down to 5 a day at the moment.

    I got naproxen for pain and find it very good , it helps me sleep a while .

    There's loads of advice on the NRAS website too and they have a great helpful phone lline xx

    Hope you feel better soon x.

  • Make sure you take your pain meds reguarly don't not take one dose just because you feel brighter(i know your suffeering now,but long time it oays to take them all the time) I mix aand matxh my pain meds,i take paracetamol and codiens in the morning along with one naproxan(i don't take anymore of this one until the next day) Then i take paracetmol at lunchtime and if i am really feeling rough i take tramadol as well.xxxxxxx

  • You poor thing. Sounds so frustrating. The funny thing is that I have so often come across similar experiences and they are most often with sero negative patients. I really wonder if the RA meds work better for the sero positive. Did you have positive CCP as well when diagnosed? I was also diagnosed with sero negative and had positive CCP but have so far not been taking RA meds and controlling my disease with AIP and LDN and supplements, a nontoxic regime. The AP protocol might also be something that you could look into. You can find very thorough information on The Roadback website. Take care and good luck:)

  • I don't think I've been tested for CCP. I know I tested positive for rheumatoid factor 8 years ago when I was diagnosed with fibromyalgia, but subsequent blood tests over the past 20 months haven't. All I know us tgat at the moment I am in more pain than I have ever been and it's driving me mad. I will investigate the AIP and LDN that you have mentioned.

  • Positive RF is not exclusive for RA where as CCP more or less is. Many AI conditions havé pain and the symptoms you discribe. What do your latest lab tests say?

  • Low ESR, low CRP. The highest my ESR has ever been is 15, but my rheumatologist said that for me that was very high. I am usually around 3 or 4. I'm due another blood test this week (have them every four weeks). Did you get the LDN prescribed ny your GP or your rheumy? I'm seeing my GP on Wednesday, but haven't got a rheumy appt for at least 6 months, although I could ring the rheumy nurses up and ask them to ask jy rheumy if I could try it. Is it readily prescribed here in the UK? And, if I'm lucky enough to get it, are there any side effects? I am starting to feel like all these heavy-duty treatments are beginning to poison me.

  • Really recommend a try. You can get all the information on ldnresearchtrust.org. I am getting ii from UK. prescribed by a LDN doctor. Everything explained at web site. Works really well! Sent to me in France. At the website there is also information for your doctor, that you can download. Good luck:)

  • Thought I'd update you - my gp wouldn't prescribe ldn, and at the moment I can't afford to pay for it privately. She has upped my gabapentin to 2400mg a day, and I am seeing the rheumy nurses next Wednesday to go onto hydroxychloroquine. I'm hoping I don't get any nausea with it, as I did with both sulfasalzine and methotrexate and had to come off of both. Luckily I've had no side effects with the leflunomide, but I take it at night as a precaution. My gp also thinks I'm having a massive fibromyalgia flare on top of everything. so frustrating, as my son is coming for Christmas and I haven't seen him since September. But I am fortunate to have a very supportive husband.

    Happy Christmas to you and all the members on this forum. God bless xxxxxxx

  • Too bad with your GP😟This is what often happens when your GP has no knowledge of LDN. Many patients take with them the facts about LDN that the LDN Trust Foundation has for doctors and that you can download and take with you. Its a shame since LDN has shown to help with FM pain quite effectively.

  • I printed off all the info from the website you recommended, but she wouldn't prescribe it. She is a staffed GP, maybe if I try seeing one of the partners they might prescribe it. Anyhow,mI wish you a very Merry Christmas and pain-free New Year🎅😀xxxx

  • You can get a prescription from Clinic 158. They work with a LDN compounding company in Glasgow. The perscription is not expensive and LDN months supply is not expensive at all. Since there really is quite a lot of evidence for the benefits of LDN I do hope you find a way to try it😊

  • Thank you, I will try and go down that route. Merry Christmas xxx

  • Just in case your GP didn't explain LDN isn't licensed for RD or some other conditions, & won't even be considered for license until trials prove it works basically. Some doctors will prescribe it but only as an off-license prescription (sometimes called off-label or special prescription), this link gives more info if it's unfamiliar to you gov.uk/drug-safety-update/o... I hope this goes some way to explaining why your GP wouldn't prescribe it if he didn't.

    I started leflunomide recently but as double therapy with methotrexate. Hydroxychloroquine was my first DMARD & it worked very well for about a year, this is when I started MTX but still didn't help so HCQ was stopped & MTX suddenly worked. I hope HCQ works for you, it does work for many so there's no reason to think it won't but every reason to hope it does.

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