Coming out of the gap

General
#1

Hi everyone!

So, for the past few months I’ve been coming out of the gap. I’ve been on a combination of Enbrel and Methotrexate for about 4 months now, and I’m completely off prednisone (yay!). While I’m definitely feeling drastically better, I don’t feel great. (Just for reference, I’m 26, was diagnosed fairly quickly; rheumatologist doesn’t think there is any permanent joint damage at this point). I’m still having pain in one hip, and in my knees (not severe, but still there). At first I though maybe it was de-conditioning from being so sedentary for nearly a year, but I’ve been walking a lot, doing occasional classes at the gym, yoga, etc. and I’m not feeling continued improvement/still not feeling back to myself.

I’m still waiting on blood test results, but I can feel that general inflammation is much lower.

I suppose my question is: what is life supposed to be like once you’re out of the gap? I’m not sure if this is my new normal. I was expecting to bounce back a bit easier since there’s no joint damage. I’m nervous about trying or switching to other medications because things have been so much better on enbrel and I don’t want to mess anything up.

Is there anything that I can do that may help things continue to get better while not changing my meds?

#2

Hi @Sarahh,
I can only speak for myself, but I do recall a few other people here having similar results as I had. When I started Enbrel, the improvement was quick - within a couple days I was feeling great, and it didn’t take long for my psoriasis to clear up almost 90%. It’s not unusual for the biologics to take several weeks or months to begin working, though, so it’s pretty normal how your PsA is responding.

With that being said, it would be ideal to have 100% relief, wouldn’t it? I don’t think that’s the case for most people, although some do say they seem to have a complete remission. Most of us feel that our biologic is more realistically about 70 to 80% effective. I’m sure that doesn’t sound too promising to you, especially since you’re very young and it would be nice to be completely pain free.

I’m wondering why your rheumy thinks you need Methotrexate alongside the Enbrel…somebody correct me if I’m wrong, but a while back there was an article posted here I believe that explained why MTX isn’t needed with Enbrel as it is with some of the other biologics. I’ve never taken MTX. Not that it’s a bad thing, and if you don’t have SEs from it, I’m sure it’s not what’s making you feel a little off.

There is a complimentary therapies topic you could check and see what others do to help alleviate symptoms. A lot of people have trouble with sweets. Some people have trouble with nightshade vegetables…some recommend certain herbs or vitamin supplements…these are all things you should consider. I myself wouldn’t jump ship on Enbrel unless I was feeling like I did before I started it.

I hope there are improvements in your hip and knees—it seems you’re keeping up with exercising, and that’s great. Just take it slow and don’t overdo it. Your body could be just telling you that because, like you said, you were idle for quite a while. I should mention, my back, which was horribly stiff before I started Enbrel, felt 100% better very soon after I started Enbrel…but 7 weeks in, it went out, and I’ve had to baby it ever since! My feet went out, too, a few months after that. I overdid it because Enbrel made me feel so good.

So, yes, be careful. Your body is still recovering from PsA attacking your joints and putting them at risk for permanent damage. Even if they’re not damaged, they’re probably not back to normal yet.

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#3

It’s not uncommon to do combo therapy. I use Enbrel with leflunomide, and an NSAID during flares. My mom uses Enbrel with mtx because she tolerates it well.

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#4

Thank you @Grandma_J! I did finally hear from the doctor regarding the labs, and it looks like my ESR has gone from 91 down to 60 in 3 months on Enbrel, so there’s still a lot of progress left to be made. I’m considering this good news since it means that this is probably not my new normal yet (whew!).

And yes, we are doing both MTX and Enbrel. According to my rheum, in some patients the combination of both helps the enbrel work better, but we are going to remove the MTX once everything is under control. But for now, I have almost no side effects from it, which I’m sure contributes to the reason for keeping it in case it is helping the enbrel!

Since I do still have so much inflammation, I’m using this as an excuse to tone down the exercise regime and stick to more walking and easier exercises. I’m glad the lasting pain is not just from reconditioning!

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#5

Give it a while longer to work would be my advice. I’ve now been on Erelzi, which is a biosimilar to Enbrel for almost four months but it wasn’t getting my inflammation down enough (although it was much better). My Consultant then added Methotrexate into the mix to help things along. Very soon I was much better with the combination and my inflammation levels dropped to below 5 (CRP), which almost nothing. It had been 85. Apart from a slight flare two weeks ago I’ve been pretty good. I do get awful side effects from methotrexate though so have recently switched to injections instead which has helped. Good luck and keep going :blush:

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#6

Thank you @Katie909! I love the enbrel so far, since there are some joints that have improved so much that it feels like nothing was ever wrong, and life is generally much more bearable! Hoping that things continue to improve over the next few months!
As a side question, when you flared up, was it as bad as it was before getting treatment? My biggest fear is having a flare like my initial symptoms, which left me unable to walk, stand on my own, etc.!

#7

The worst I felt was at the very beginning before I got any treatment. I lost the use of my hands and could barely walk. I’ve never had a flare as bad again. The flares I’ve had have been in between different drugs and when I was off medication when I had flu. But when I’m on medication the flares are much less and are manageable and sometimes just a nuisance. X❤️

#8

Me too Katie, just like that before treatment. Okay, one hand worked all right but it was all very awful and weird. Nothing remotely as severe has happened to me in the last 6 years.

@Sarahh, you mention ‘bouncing back’, I don’t recall many here using that phrase to describe their improvement … it’d be lovely but slow but sure can be awesome too … in time.

#9

Yes it’s a funny thing because when you are told by the Dr that your Arthritis is better & your doing very well. All you can think of is then why am I still in pain? My expectations were probably too high & I did think I’d be back to my ‘old self’ (not that I can really remember what that was now) I’m only on Methotrexate & like you I have seen improvements in side effects by changing to injections. It does still leave me struggling with nausea tiredness foggy head ext but some weeks are better than others. I’m putting up with them because I simply can’t face trying something else & starting all over again at this point. It seems to be working for now so we will see

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