Hi there! This is my first post, but I’ve been sort of “lurking” for months. I started having symptoms last June which started in my right knee only at night and the morning and felt very much like an injury (which led to seeing multiple Orthopedics and pretty much a waste of money). In September, things started getting much worse and the pain spread to the left knee, then to the ankles, then to the elbows, eventually to the neck and jaw until it was so bad I could barely move. The good news about things getting severe so fast is that the Orthopedic quickly recognized that what I actually needed was a rheumatologist and I have a great one that I’ve been seeing since October. She thinks that I am in the small percentage that have PsA without having Psoriasis (although my dad has psoriasis so it’s definitely in the family).
I’ve been on 15 mg/day of prednisone since October (I know it’s horrible for you, but I was quite literally disabled and in excruciating pain without it). We also started with Plaquenil (which did nothing), and then about six weeks ago we started Methotrexate. After about 3-4 weeks I did start to feel improvements and lowered the prednisone dose by 5mg (at rheumatologist’s instruction). Obviously, I was slightly more stiff than I had been previously but I was cruising along fine for the first week on a lowered dose. Then the pain started increasing again. It’s not bad enough to make me want to go back to 15mg (I really can’t deal with the cravings, weight gain, moon face anymore), but by about 7pm I’m super stiff and sore and generally cranky. And the days certainly aren’t pain free either.
So my question is whether this increased pain could be because of the taper? Has anyone had this experience? It’s just suspicious because when I was on plaquenil and tried to taper to judge if it was working, within 24-36 hours I was in excruciating pain and that hasn’t happened so it seems clear to me that the MTX is doing something.
I just feel really desperate for the MTX to work and to get off the prednisone for good!
Hi @Sarahh! I’m wondering why they don’t transition you over an NSAID. It would give you the pain control that you need while waiting for the mtx to get up to speed. You also might be eligible for a biologic soon, since mtx is your second DMARD.
The increased pain is likely due to the taper… but the question is what is it a response to? Is it because the MTX is not yet working full force (or won’t be effective enough) and it is just inflammation rising, or is it because tapering from prednisone in and of itself can give you joint pain?
This is a question for your rheumatologist, however I can give you my personal experience. I was on very effective Enbrel which once the taper finished worked to control the disease really well - so in hindsight I can see what was being caused by the taper for me.
For me, those sorts of symptoms kicking in purely as a result of the taper started after I dropped below 7.5mg (worst dropping from 5 to 4, then again from 2 to 1). This seems consistent with the reading I’ve done that 7.5mg is the average “physiological dose” - ie the equivalent of what most people’s bodies produce naturally - so once you get below this you start getting, effectively, withdrawals until your own adrenal gland kicks back in properly to produce enough of your own cortisol.
As you are still above this level, and haven’t been on MTX long enough to get the full benefit, it seems like it would need to be considered if this is from the disease itself. Stoney made a good suggestion on both the NSAIDs and looking at other options if the MTX is not enough.
Hey Sarahh, glad you’ve come out of the shadows! We just knew there was someone out there in the underbrush … LOL
Your rheumatologist will definitely be interested in what happened: I’m guessing that the conclusion will be that your inflammation was being kept at bay by the prednisone, and that perhaps the MtX isn’t doing such a wonderful job. That alone will be an important bit of diagnostic information for your rheumie.
One thing to be glad of: you’ve got a diagnosis and a rheumie that’s working on getting you back on the road. Unfortuntately, it can take time. So here you are in another “gap”. You just have to be a patient patient in the knowledge that most of us do get relief eventually. Chin up, there! When do you see your rheumatologist again?
This definitely seems worth addressing with my rheumatologist. I know that when I was first diagnosed the ONLY thing that provided ANY relief at all was prednisone. I’d tried every type of over the counter pain reliever with no success. However, we didn’t try any other prescription NSAIDs, so it may be worth a discussion at the very least.
I’ve been hoping over the past few weeks that the increased pain was due to the tapering itself. I just feel so desperate for the MTX to work and to be able to get off the steroids! How long were you on steroids for? The longer I’m on them, the more concerned I am about how awful it’s going to be to taper off them fully!
I have an appointment in three weeks to see how the MTX is doing. I really hope that I start to see more improvement in the next few weeks. I’ve really been tolerating the MTX shockingly well with almost no side effects (although I haven’t yet had the blood work to check on liver, etc.) and I’m desperate to be “normal” again. I’m 26 and the past six months have been absolutely awful!
I think the worst part about this disease so far is how long it takes to even gauge is a medication is working. It’s brutal!
I was on them for over 9 months - the last two of which was basically the taper. I was also on MTX for all of that time, as well as plaquenil for some of the time, but it appeared they had minimal impact.
Steroids do get harder to taper off the longer you are on them, unfortunately, but if you can find a medication that controls the disease, you will cope with it. As you are in the US, you shouldn’t be forced to sit on them for extended periods while they mask the fact that your DMARD is not working (if that’s the case - many people need 3 months to get close to full effect from MTX).
If you have another appointment in 3 weeks, that means you will have been on MTX for 6 weeks? If it is not giving much relief, then it is definitely time to talk to your Rheumy about what the process is from here - another DMARD? How long you will trial that for? And then if that is still not working, what the steps to a biologic would be? And as you say, talk about prescription NSAIDs (I found Celebrex to be immensely and surprisingly better than over the counter nurofen, and Difflam gel, which doesn’t interact with the other NSAIDs, is great if you have a couple of joints creating extra havoc).
I really understand your desperation, and it is so hard to feel like nothing is working (except steroids, which are not a viable long term solution), just know that eventually almost everyone finds the thing that works, and things do get better
Jen said it all, but when you’re in the place you’re in, it’s very hard going. I spent the better part of a year on prednisone, bouncing around on the lowest dose I could tolerate, whilst waiting for anything else to actually work. Then I came off it pretty rapidly (but under supervision) due to two unexplained fractures in my pelvis (as in I didn’t fall or anything) everyone thinking I had osteoporosis. I don’t thankfully.
Since then I’ve only been on one short 8 day course. Sulfasalazine is working for me now on 6 tablets at day. But I still can’t operate without Naproxen (a NSAID) and very very occasionally as in about once a month some Tramadol.
It does take time for your own adrenal gland to begin working again too or at least it was for me. Hence during a taper it gets worse before it sort of settles better. The intensity of the pain lessened over time I assume due to my own adrenal grand beginning to work again.
And it’s just so fabulous you’re tolerating MXT so well too. That truly is fabulous.
Hi Sarah
I have huge empathy with you. I am also tapering off pred - and desperate to get off it (also fed up of weight gain and moon face!) Waiting for Benepali (Enteracept) to kick in and take over.
I think that the withdrawal from pred can include stiffness and inflammation, which is obviously not great for us lot! It can make it hard to tell if the pain is truly because the steroids were controlling the PsA symptoms so they are flaring back up, or if it is the steroid withdrawal itself. My best guess is that it is likely to be both.
I am going from 5mg to 4mg now and also struggling at this change. Getting a bad tummy, shaking, and generally feeling very out of sorts with fatigue etc too, but need to push through it.
What dose of methotrexate are you on and how are you taking it - injection or tablets? How many weeks have you had on it? It really does work wonders for a lot of people and if you are not getting hideous side effects I reckon it is worth sticking it out the 12 weeks to see if it works.
Hi Lucy,
I do think a lot of the extra joint pain I was feeling was a result of tapering. It started about a week after going from 15mg down to 10mg and lasted almost two weeks. But after that, things started to improve a bit. I feel like it’s probably time to go down to 7.5mg but I’m dreading it because I don’t want to face the increased pain again.
I’ve been on 15mg of methotrexate (pills) for 9 weeks tomorrow! Definitely had noticeable improvement at about 4-5 weeks, but it feels like the progress has plateaued. Other than methotrexate and 10mg of prednisone per day, I’ve been taking ibuprofen when things feel especially difficult.
I have an appointment in a week and a half with the rheumatologist. I’m going to see if we can try upping the methotrexate dose and maybe try some other prescription NSAID to help with getting off the prednisone.
Do you know if people find methotrexate more effective with injections? I’ve heard it helps when people have side effects (which thankfully isn’t a problem for me), but I’m wondering if injections may help me get more improvement.
The research on methotrexate shows amlmost the same bioavailability and clearance regardless of oral or injection administration, so there shouldn’t be a difference in effectiveness, however it does seem to make a big difference to side effects, so you may find it useful if you go up to the maximum dose of 25 mg.
I get side affects at 20mg orally, but don’t notice any at 10mg orally.
Hi Sarah
It is brilliant that you don’t have any side effects on the methotrexate. It amazes me how drugs can affect us all so differently. I moved to the injections because of vertigo and nausea, but I still had the vertigo at 20mg, and also some issues with my thoughts which was really scary! I do think that methotrexate helped my joints though.
Well done for getting through 9 weeks. Another few weeks and you will see the full benefit of it. I think 20mg is an average dose for it - but speak to your rheumy.
Are you taking good tummy protection meds? I ended up damaging my gullet because I stopped taking lansoprazole. I’ve got an endoscopy next week to find out what is going on. The docs think it was combo of steroids and nsaids which caused the problems.
