I was diagnosed three years ago and the first flare up I had was intense. It started in my ankles and I thought I must have twisted it so I went to the doctor. They did an Xray, saw nothing and sent me home. It then spread to multiple joints and I went to numerous doctors who all sent me home with pain meds. So the flare-up became bad where both my wrist, knees, and ankles where involved. The pain was so intense that one day I was just unable to get out of bed and I was screaming in pain. Luckily the hospital I went to after that prescribed me prednisone which helps to reduce all the inflammation. I was diagnosed with RA and even with the pred it took me a couple of months to regain my strength from the intense muscle atrophy - plus the meds made me very sick. Every time they try to take me off the meds, the inflammation came back - so it was a long battle. However, I am so lucky to say that after that I have only had minor aches and stiffness since. I take some Nsaids which helps with the pain and until my attacks become more consistent my doctor does not want me to start any chronic meds. My question is how long have people remained in this remission phase. I'm literally petrified every time I feel the stiffness because I think " this is the one" and I am going to have that same intense episode.
Remission : I was diagnosed three years ago and the... - NRAS
Sounds very unusual. Are you saying you have as of yet only been on pred and NSAIDs sporadically? You mentioned also that meds made you very sick at one point. What meds? When you were diagnosed 3 years ago what meds were you given? Only pred?
RA progresses and behaves in different ways. Interesting to hear if your RA has been treated differently than usual from the beginning. All the best. Simba
When I had the original flare up I was put up on prednisone. I stayed on for a course of 3 months. Every time I try to wean off of it, the flare-up came back. After three months I was able to get off of the meds and then I had severe muscle atrophy which I did physical therapy for. The Prednisone is what made me sick. I was very nauseous on it and gave me severe gastric pain. Since then I just take Naloxone when I feel pain, it is prescribed so it is a higher dose then Aleve but that is all I take.
Because I have been responding to the NSAIDs and no other intense flare-ups have occurred, my doctor has no started me on chronic meds.
What pred dose were you put on? Do you mean you take Naproxen when you get pain?
I was on 40mg and then we lowered it in 5 mg increments until I got to 5 mg. Yes, I do mean Naproxen. Sorry, I am studying for a pharmaceutical exam and have drugs on the brain.
That was quite a big dose but you did taper quickly. Would be interesting as HH said to hear about your bloods and other tests.
I was started on 50 mg prednisone then tapper down weekly but that didn't solve my ra best of luck to you
So, you have never been on DMARDs in 3 years ?
Are you under the care of a rheumatologist ?
No, I only took prednisone for three months and then once I was able to get off of it I was able to take NSAIDS for any pain. Yes, I have a rheumatologist who I visit every three months for check-ups, but she still does not want to start any chronic medication.
Taking NSAIDs and prednisilone over long periods of time also have possible side effects, but don't offer the joint protection that DMARDs do.
It might be worthwhile asking your rheumatologist for an explanation of their thinking and how they are monitoring your joints ?
This is not exactly so. It has been shown that in early RA pred in fact gives good protection against erosion and progression.
Ok, poorly worded !
DMARDs offer the best joint joint protection for the majority of people.
Prednisilone of course, reduces inflammation and thereby does offer some protection. I am aware of the studies supporting this claim.
But, most people will not manage only with prednisolone throughout the lifetime of their disease without degeneration of joints.
What several studies have found is that pred in fact has an arresting effect on disease progression in early RA. An effect that can be seen many years later. This disease modifying effect was seen in early research and has been taken up again in studies. Mtx+pred in early RA is seen as very effective. Pred alone in high dose without the mtx is not something new research is interested in. What makes TDs case so interesting is the fact that he/ she was given a high dose of pred and then tapered down without mtx with an astonishing result. Perhaps mtx is not needed in the beginning if you get s high dose like TD and tapet down quickly(?).
TD,s path read exactly like my onset, it could have been my story.
I too was given 40mg of Pred for the six weeks leading to my first Rheumatologist appointment. Same explosive symptoms. I tapered under a schedule written by my GP so my symptoms came back in time for my appointment.
The Rheumatologist commended my GP for having the foresight to give me this high dosage.
Where my story diverges from TD’s is that my rheumatologist believed in treating fast and hard not wait and see.
I went onto Mthx, and Hydroxychloroquine while on a sliding taper of pred then due liver issues tried Sulfasalazine ( very allergic) and Leflunomide with the same raised ALT.
Now in remission on Enbrel then moved to Benepali injections and Hydroxychloroquine, despite being in remission I have small flares specifically if I’m about to go down with something viral. Due to have a steroid shot into my left foot under ultrasound because of these.
Are you having regular blood tests TD? Plus are you on a stomach protector for the Naproxen and it’s long term effects?
You obviously still suffer pain with having to take the Naproxen?
So you never know how things would have unfolded had you waited with the mtx. What was your situation when you went to the rheumie? What kind of mtx dose were you initially put on?
I have been on prednisolone for just over 14 months. Initially 30 mgs per day, then 60 mgs day for several weeks whilst and waiting on results. I had previously been on HDQ and then sulpha, but not MTX. I then tapered back down to 30 mgs when MTX started. During the time on prednisolone only, I was at my worst systemically I was Ill, brain fog and extreme fatigue and burning hot hands being major factors, but it was altogether worse than that. MTX had a positive effect on all my symptoms and gave me my life back, until the side effects became too great. MTX was a wonder drug for me. Prednisilone did/does not touch my main symptoms. There are others like me.
So back to the point again, RD is most likely a complex of diseases some will respond to prednisilone others not. Some require MTX / biologics.
I've never had a pattern like that, as I've never achieved remission without being on disease modifying drugs (DMARDs).
Were you diagnosed with RA or palindromic arthritis? And are your joints and blood being monitored? As sometimes the disease can be progressing even if you are not in extreme pain.
I entirely agree that you shouldn't be offered the stronger drugs unless you need them. But prednisalone and NSAIDs have risks too, so taking them all the time isn't a perfect solution. I would suggest you need to ask your doctor more questions about your diagnosis, are you sero-negative or sero-positive for example. Also ask about the possible prognosis, and whether you can be monitored with ultrsound to check your joints.
Are you in the UK? As your treatment doesn't sound typical?
Now HH this is really interesting. The pred was only taken for three months(!) Dosage not yet known. The remission for TD means taking NSAIDs sporadically. Once again my question mark. " could it be that mtx, when taking away symptoms by depressing prolifiration of all cells not only cytokines, infact can feed the pathogenesis of the illness itself"? Could there be a connection here between stopping mtx for whatever reason brings back RA pain quite ferociously(?). TD had only a course of pred and when stopped, no catastrophy. I hope TD comes up with a bit more info on bloods.Simba
I think this is another situation where the huge range of RA can set hares running. To be totally blunt I find it pretty unimaginable trying to survive on just NSAIDs, and can only think that the people who manage to do so have a different strain of RA to mine. The speed, ferocity and aggression of my uncontrolled RA is quite overwhelming -let alone the fact that it is excruciatingly painful!
There are a number of people's experiences on here about having a bad period that was treated aggressively in one way or another, and then they have a period of calm for many years (maybe even forever, we don't know unless they come back to tell us!) My first rheumy described this as a relapsing-remitting pattern of non-erosive disease and said she wouldn't describe someone's RA as persistent until it had been active/present for two years. I was initially described with sero-positive non-erosive RA - sadly a diagnosis that changed!
I have a hard time believing that RA was somehow fixed with TDs initial treatment ( if clear RA diagnosis) but it does show that treating with pred initially for three months put the RA(?) in med free remission in fact for a long time. As a patient I would personally choose to try this method first. I think 40mg pred does calm down mostly any situation. What follows after these years of med free remission (?) is ofcourse very hard to know.
Yes , like many people in UK my first treatment was pred, and overall I was on steroids for most of first year of diagnosis. For me it wasn't enough even with thriple therapy (and a huge lifestyle change) to kick the RA into the long grass. My experience is only of one UK rhemy, but she certainly wasn't going to prescribe DMARDs until she was sure that was what was warranted so I imagine many of her patients were started very slowly.
I don't think TDs disease was fixed, just remitted - hopefully forever if nothing happens to spark it into life again.
Did find a lot of old research on pred and early RA and the long term possitive effects on illness progression ( could still be seen after 5 years) When you said you were treated with pred. Were they injections or ongoing pred medication, if on what dose? Seemes like in these studies the pred is only given in high dose with tapering during 3-6m. Like in TDs case
When I was in the hospital they played around with drugs a lot and doses. So I did get an injection but it was of Dex and I always received the pred as pills
I'll chip in here too !
The evidence does strongly suggest that there are many disease processes all categorised under RD. It therefore seems reasonable to believe that some RDs may respond well to some drugs ie prednisilone and some others ie DMARDs.
In time we will be able to separate these RD processes from each other and offer specific treatments for each one.
But at the moment DMARDs work best for the many. Fewer people will have some success with lifestyle changes and whatever.
MTX was my saviour, it transformed my life ....until the side effects kicked in.
Nothing else touched me, prednisolone is a sticking plaster on a huge wound, it helps a good bit, but does not replace MTX. I could not any life with prednisolone only.
Others will have different experiences, probably because they have different disease processes.
That is basically the mindset of my rheumatologist, she does not want to start longer terms meds because of how I am presenting. Because it is so inconsistent she is trying to wait it out. As of right now, although there is pain, it is nothing compared to cases I have heard about (and from you guys).
Yes, every three months I get a repeat blood work and the only abnormality that shows up on my CBC/Chem is a low PCV ( anemia) I got many images when I was originally diagnosed including radiography, U/S, and MRI. The only thing that was shown was swelling, no joint or muscle damage. I also had a tap on one of ankles because of the intense fluid accumulation and it came back infection-free, with neutrophils being the predominant cell. I get radiographs done every six months just to check for any bone/joint damage. But there has been no signs of osteolysis or bone proliferation. I am seropositive for RA. I got two tests done, the first one I tested negative and the second one positive. I'm not sure the difference between the two tests but my rheumatologist told me that she has had patients before who tested negative on that type of test they gave me and tested positive on the second (different type) of test
Well that's great that you are being monitored so carefully. Most likely you are rheumatoid factor negative (which is the least precise test) and anti-CCP positive which is the test that is 97% relaible for RA.
And I think since you've been like this for 3 years now, with no sign of joint damage, then perhaps you can relax as this could be your personal version of RA and it will stay like this. If you read posts here you'll see that RA comes in so many forms. (In fact if I were you I would even cut down the number of x-rays to annual to minimise the radiation you are subjected to - something you could ask about perhaps?)
Thank you, that is very helpful. I couldn't find the name of the test on any of my medical files. That is good information to know!
I hope so, I have just read of so many cases where it goes away for years and then comes back. So I want to make sure I am not being closed minded to the idea of that.
I have had some horrific flares the where the pain was so intense. I am under the mineral hospital in bath and they are fantastic they have a helpline and if you are distressed they will take you in and treat you with what is required.
I have just finished taking pred as methotrexate is now working well takes about 6 months for you to feel the effects
I wake up everyday counting my blessings and try to enjoy the day . I hopefully never want to experience the pain of a full blown flare up again . Do hope they get your meds sorted for you my love so you don’t have to go through this again .
Hi Radoone. Your bit about the mineral hospital in Bath caught my eye. I live in Portishead. How do you get referred there? Is it on the nhs? And what treatments were you given?
I was on just 1/2 a pill per week flared back on once a day slower weaning off 1 mg
You have had a real bad spell darling. One persons flare is another tickle is you don't mind saying so. You seem to have been hit very hard darling and your lucky you don't have NSAIDS yet, but I am sure the next flare you have the drs looking after you will nip that flare in the bud. If your ever in doubt go straight to the drs darling.xxxx