ive had R/a 13 years the only prescribed drug I've taken was hydroxychloroqiune for 6 months which had no effect. The first couple of years I had the odd shot of steroids which was miraculous but when I discovered the side effects of all the ra drugs I didn't go back that is until a few months ago when my elbow was sooooo bad wrists shoulder that I went to doc for a jab. Unfortunately he had run out and gave me predisilone tablets 40 mg reducing but when I finished cause the pain was back so I ordered more and was not refused. I found 10 mg kept pain to manageable levels along with occasional ibuprofen but after 3 months I thought I've got to give up this drug. 6 weeks ago I cut down and each day I felt worse but I percivered finally got off 4 weeks ago and have been in frantic pain since. My feet ankles shoulders elbows neck wrists etc are far worse than they've ever been. I'm in agony and havnt got out for 3 weeks!!!! Does anyone know if it could be the infmmatory suppressant effect predisilone. Thank you nathen.
Nathan, the only time i take prednisone is when I have flares and it's kind of a deal where you take 6 a day , then 3 and work your way down. i know a lot of people take it every day. I have never noticed any difference when i quit taking it and it usually takes about 4 days to kick in.
Hi Nathan
in that your joints were bad before you went to your Dr it is most likely the RA flaring up. Really a jab is better ( which is what you were hoping for)as once you take prednisolone tablets for more than 3 weeks you have to come off them in a slow taper. Usually they are prescribed to tide someone over pain / inflammation until a DMARD has time to work (like the hydroxychloroquine, methotrexate or sulfasalazine) so I am surprised your Dr has just let you have more of them without a longer term plan for the RA
many folks, including myself, are on a long slow taper( mine is 1gm a month over the last 4 months and previous to that 10mg then 7 half mg was keeping me fine.) but , like you, I'm keen to get off- don't like it! It s a temporary symptom reliever which can help through minor flares. There are lots of negative issues surrounding long term use of pred- so good to come off.
But the only option then is to see if NSAIDs ( prescribed by Dr) can help or some kind of DMARD to actually hold back the disease process and you mention not liking side effects of those. I can understand why you feel like this, but for me, the synptoms were so bad I was willing to try anything. So I am now ( after a period of time) taking all 3 of those drugs plus a biologic and I am so much better and able to lead a normal life.
So I d suggest a visit again to the consultant to see what they would suggest.i think our choices are driven by how bad the RA is but I wanted to let you know RA drugs can work, although everyone is different in how they respond to different drugs .
All the best . Do hope you get some relief from pain soon
Hi Nathan
in that your joints were bad before you went to your Dr it is most likely the RA flaring up. Really a jab is better ( which is what you were hoping for)as once you take prednisolone tablets for more than 3 weeks you have to come off them in a slow taper. Usually they are prescribed to tide someone over pain / inflammation until a DMARD has time to work (like the hydroxychloroquine, methotrexate or sulfasalazine) so I am surprised your Dr has just let you have more of them without a longer term plan for the RA
many folks, including myself, are on a long slow taper( mine is 1gm a month over the last 4 months and previous to that 10mg then 7 half mg was keeping me fine.) but , like you, I'm keen to get off- don't like it! It s a temporary symptom reliever which can help through minor flares. There are lots of negative issues surrounding long term use of pred- so good to come off.
But the only option then is to see if NSAIDs ( prescribed by Dr) can help or some kind of DMARD to actually hold back the disease process and you mention not liking side effects of those. I can understand why you feel like this, but for me, the synptoms were so bad I was willing to try anything. So I am now ( after a period of time) taking all 3 of those drugs plus a biologic and I am so much better and able to lead a normal life.
So I d suggest a visit again to the consultant to see what they would suggest.i think our choices are driven by how bad the RA is but I wanted to let you know RA drugs can work, although everyone is different in how they respond to different drugs .
All the best . Do hope you get some relief from pain soon
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.
I can fully sympathise with you Nathan. I've had RA for around 13 years too. I stopped taking DMARDs and steroids in any form more than 6 months ago due to complications caused by another chronic health condition and have gradually gone down hill since. I have serious pain in all the joints you mention plus my knees, which I rarley had trouble with previously, but they've been so bad this last month or so that I have excruciating pain getting up from sitting and serious problems walking more than 50 yards or so. I rarely go outside the door these days and when I do, I have to arrange transport. Tomorrow for example - my daughter is taking me to buy a powered riser recliner chair as my knees have become that bad. Some of my other joints are getting noticeably more damaged by the month and I'm more than a little worried where all this is going to lead. I'm currently taking slow release tramadol, naproxen and paracetomol, which do help a little but don't slow joint damage and are nowhere near as effective in controlling inflammatory pain like DMARDs were. Rheumy started me on hydroxychloroquine 5 weeks ago, not sure it's helping much yet, but I live in hope. I also wear wrist splints and a thingamybobjig on my right hand to try and slow up deformity.
I mention the above not for sympathy, though a little wouldn't go amiss but to point out what can happen to some people, and I emphasise some, if this godawful disease isn't treated effectively. I hate taking meds of any form, especially when I was on powerful DMARDs, but would now take them in a heartbeat if I could as life sure ain't much fun these days! I think Rowbirdie offers sound advice. I was on methotrexate for 9 years - it seems to be the drug of choice for most folk, and I had no side effects to speak of. My bloods were monitored every month to check for negative symptoms. Do make an appointment to see your cosultant. You can then discuss the pros and cons of different meds and arrive at a decision as to what might be best for you.
Hope things work out for you and the pain eases soon.
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.
Oh dear Tony what a nightmare. I forget to mention my knees which have only stared these past weeks it hurts like hell getting off the chair or even the Lou seat.
why did you have to come off DEMARDs did they damage your body? It seems crazy that you are suffering so badly after years pain free.
6 years ago I embarked on a natural cure because I felt drugs only store up disease. I used an English program which involved removing all foods that have an acid ash residue after digestion. Epsom baths followed next day shower. Cider vinegar malasses etc it was a slow process but after 8 months I was 80% better I was told I must stay on the program until all symptoms were clear and then for a further 3 months. I cheated and slowly it all came back. 4 weeks ago I've restated the whole procedure I keep reading the testimonials to inspire me. They claim it's all caused by acid and a virus by removing the acid you kill the virus. Some people recover in weeks most take months.
if I take the drugs right now they tell me the inflammation detox etc will take longer to work. Catch 22!!!!!
i hope the hydroxichloriquine eases your pain I did once take that drug because I understood it to be the least toxic.
we have much in common yours sincerely Nathan
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
Don't mention sitting on the loo!! I've had to buy a frame with a raised seat.
Pity you couldn't stick to that natural cure if it was helping you, but I do understand how difficult it must have been. I couldn't last 8 days let alone 8 months without pain relief and I speak from experience. I tried stopping methotrexate several years ago and ended up in a heck of a mess. I held out for 5 weeks then phoned rheumy begging to have a steroid jab ASAP.
Intrested hearing about your kidney problems caused by ibrufen. That seems quite a high dose you are taking. Do you have bloods taken on a regular basis to monitor your kidneys. I ask because I take naproxen on a regular basis and am wodering if my kidneys should be monitored?
I gave a brief explanation to one of Rowbirdie's posts above the reason why I stopped taking DMARDs and another type of immune suppressant.
On a more positive note...I'm extremely fortunate to have an angel of a wife who helps me do lots of things I am no loner capable of doing without so much as a tut...at least I've never heard her tut! I would not be able to manage without her.
That's a help Tony I'm on my own. All NSAIDs harm the kidneys I now take only 200 to max 400 a day.
Hmmm.... you cut down from 10mg to what?
Preds needs to be treated with great respect and cutting down should be slow and sure, 1mg per week, in my book, at least.
If Mrs Mop or Eileen respond, they'll give you more exact reduction levels.
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.
Got my med doses a bit mixed up last night... I've been prescribed 500mg a day of naproxen so maybe 400mg is not particularly high. I try to keep to it down to 250mg because I have a heart condition, but it's not easy.
Steroids are an immune suppressant that's why I can't take them.
Anyone know if kidneys should be monitored if on long term NSAIDs?
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.
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.