Nathan

Thank you for all your experience it's very helpful as I feel in a very lonely place all these years with ra.

you tapered much more slowly than me maybe I reduced too fast and that's why I have this massive reaction.

ibuprofen has always helped but then my kidneys were affected as they can damage them. I now take no more than 400 mg per day

ive not taken the recommended treatment in favour of a holistic approach.

im not sure it's helped though and all the natureopths are ofcourse anti drugs. I'm terrified of them and can't see how they can cure ra but mask and repress it. On the other hand in light of your positive pain free effects of the 3 your taking coupled with the hell of Hells I'm struggling with I may have to think again.

ive still got plenty of pred 5 mg and I'm on repeat do you think I could do as you did and take 40 mg and taper very slowly I've only been off them 3 weeks. I suppose if I went to a rhumatoligist he'd put me on them anyway as it takes ages for the others to work. 

Thank you this really is a nightmare. I also feel fluie 😟

I think 40 mg is a lot.

My rheumy said to go to 10mg a year ago when I was at my worst and stay on it a month then reduce to 7 half which I stayed on for a long time. He told me not to go above 10mg. I think it's to do with not stopping our own adrenal system from working..... And I think you said 10mg worked for you at one point. 

but I m not a doctor so just telling you what was told me! - really it s best if you get your own individual advice from a rheumy.

As I understand it the DMARDS suppress your immune system and by doing so reduce the autoimmune response as well. Of course one of the side effects is a reduced immune system. This has not proved a problem to me, but it does cause problems for some. But you are monitored if you take methotrexate so that if you unfortunately do have bad side effects you can be taken off it immediately. So there is a teeny bit of a gamble but many are helped by this and it's a very common treatment with good results.

if you look on these forums you will also find suggestions for different holistic measures to try. For me , my symptoms were too severe to spend time waiting to see if they d work .

do talk to a rheumy as soon as you can and jot down questions before you go. 

Otherwise, heat, paracetamol, as much sleep as poss.

it s just horrible isn't it. 

 

Missed this post.

It was a reduced immune system that played a significant part in causing

serious problems for me, I was on enbrel - a powerful immune suppressant at the time, which according to my consultants, played a significant part in me getting sepsis. I suffer with recurring urinary tract infections caused by another chronic health condition. Apparently a bug from a recent UTI got into my bloodstream and caused a serious infection in my hip, which required two bouts of surgery to clean it out.

Hence, no more immune suppressing meds for me.

Thank you Rowbirdie yes it's horrendous. I may temporally go back on steroids I like to feel I've got some control and not have my immune system compromised after all we here so much about the importance of a strong immune system. I thought there's no such thing as a free lunch.

im interested in the holistic angle as I once 80% cured my ra and never felt so good in my life. It was an English program and a month ago I restarted again. Basically they say ra is a virus in an acid body. I had to only eat foods with no acid ash. Epsom baths next day shower. Cider vinegar no Tom etcetc. It was 6 years ago it took 8 months I was told I had to wait for 100% and then another 3 months after which I could eat normally. I love the testimonials and as I say I did it for 8 moths got 80% there so I know it works.

problem is I'm in so much pain since coming off those steroids it's hard to be positive. I was never so bad as this pre pred. I've now got it in my knees it hurts like hell getting off the chair or out of the bath. 

Live been barely able to shuffle around the house but tonight I've taken 2 paracetamol with 200 mg ibuprofen and I feel slightly better and less fluie.

its a hell of a thing no one would ever understand. Speak again nathan

I had exactly that with my knees. It s so debilitating and scary .I had a local steroid injection after liquid had been taken out by rheumy and it made so much difference.( funnily enough to both knees even though injection only in one)

i know you need some immediate relief - cautious use of pred might help, but also you need some expert help. You ll have to accept some immune depression because even pred suppresses the immune system( Google it)

i can understand now why you are so reluctant to go the pharma route as you ve had such success using diet. Maybe you can go back to that when this flare is under control. I would at least see your GP- say what you ve done with the pred and get some advice about how to proceed.

Yes Rowbirdie it's all scary actually. I hate going to the doctor and in the first instance when I was diagnosed the rhumatoligists was awful. I said I'm scared of the drugs and he snapped ' you'll be in a wheel chair in 3 months if you don't take them'  as you say I only want short term while I wait for the natural method to kick in. My only original question was wether I can take a quick stop start pred and when I asked the pharmacist they refer me to doc and if I saw him as I did when I went for the shot and he'd run out and gave me tab I was put on rhumatoligists list. Every month I cancel and they write with a renewal date.

i really believe in the natural program anyone who read the simple English paperback would. It costs hardly anything and there so helpful. They gave me a man my age same prognoses who was cured to guide and encourage me. I've come to believe that the body has to fix itself. The virus has to be starved by the removal of acid ash which it thrives on. Some foods after digestion leave an acid ash.

if I go to medics all they know is drugs it's non negotiable. Last night about 8pmI took 2 paracetamol with 1 200mg ibuprofen and bingo within 2 hrs I could jump out of the chair and run around. By 4am I was in agony. In my case ibuprofen only works with paracetamol. 

When I first got ra I maxed out for 2 years on 400mg ibuprofen 2 years ago I had a blood test and my kidneys were damaged. GFR was on 45 kidney disease Starts at 59!!!! So I went to an old herbalist who gave me herbal teas and tinctures 2 months later gfr was 50 3 months later is was 56 then the last time it was 64. So I must go easy on ibuprofen and that's why I thought of the shot or pred tab I've not heard that they damage the kidneys.

ive had ra 14 years and I'm very bad at the moment in terrible pain but I think if the inflamation decreased I'd be ok ie not in a wheel chair as was suggested. You have only had ra a year so you've got ages to fix it. They told me I had the most aggressive kind. It's an absolute nightmare I come to believe we are here to deal with challenges to overcome and there's no such thing as a free lunch. What a bitch of a life. Hell on earth really.

 

If you keep cancelling rheumy appointments you are kind of on your own as far as managing your RA is concerned. Isn't that more scary?!!

Well in a way yes but I have pretty much proved I can survive without them before so although the pain is more widespread and worse than ever this has only happened after prednisilone. My naturopath said the drug suppressed the inflamation and when I stopped all hell broke loose.

i have an app with rhummey on the 13 th I don't want to go only to ask him if I can take pred for occasional relief I wish he'd speak of the phone but probably I have to get there and I don't feel very active.

I have been on steroids for 4 years...you have tapered far too quickly, so have had a flare up, which can mimic the original pain.....On the Polymyalgia forum there is a clear way how to taper which is called slow and dead slow!.... wish I had known this earlier myself....good luck and hope this helps....

Thank you Linda yes I understand what your saying. There's no real guidance on this I was only taking 10 mg of pred for 3 months I guess I cut down to zero the last 3 weeks. The arthritis was by far the worst I've ever had for the past three weeks I could barely live sleep etc so a few days ago I gave in and started back on 10 mg reduced to 7.5 yesterday and although I'm still in misery I'm at least now able to drive and do some things again.

i met someone who's 40 the other day and has ra 14 years same as me but refused all drugs even though they said he'd get joint damage. I guess he's been lucky because he said its got easier these past 5 years and swears drugs repress and iventually makes things worse in some ways that diet detox saunas massage has helped and a vegan diet. He had ra as a child at 8 but it went away then when he was 12 and came back again at 25. 

Hes convinced as I am that it triggered by some sort of infection which the immune system has to overcome to defeat the disease. 

It's  interesting re polymyalga I had that before ra!! 

Life can be a bitch 😤

Rowbirdie, do i understand you to say that you're on methotrexate (MTX), prednisolone as well as one of the biologics?

Were you not able to come off the DMARDS then, when you took the biologics?

Did you get the biologics in the UK on the NHS?

Hi Light

yes I m in uk and biologic on NHS as I have not responded to 2 DMARDS over a period of more than 6 months.

i m on Rituximab which is usually taken with mxt.

the reason I am stillon2 other DMARDS is because I have only had Rituximab for 6 months. I have improved so much but they ll only reduce the sulfasalazine and hydroxychloroquine when I move into remission . At the moment it seems like the combination DMARDS and biologic are working for me. I don't really need the pred but must come off with a slow taper.

i know it sounds like loads of meds, but I just did what they suggested and have let them know if the med has made any difference or not.

it s been 18 months from diagnosis to this amount of disease control. I expect at my next appt in January they will reduce the sulphasalazine and so on.

 

Thanks for all that, Rowbirdie.

I also took Rituximab and am due for my second set of infusions in a few weeks.

A magnificent leap in disease control!

I too am still taking MTX but tapering the preds – down to 2.5mg and waiting to go lower.

Another question... Are you in London perchance?

If so, which hospital/doctor ordered the biologics for you?

Feel free not to answer if you feel it's exposing too much.

So nice to find someone in the same situation!

yes my next infusions will be soon, but I m in Reading!

moving to 3 mg pred at end of month and can't wait to finally get off it.

All the best

Thanks. You've inspired me to further insist my rheumy brings me down on the MTX and preds more quickly!