Methotrexate not working! I'm still in pain, despite my ESR and CRP being reduced

[Barb66]

I'm 18 weeks into taking mtx and have only had a bit of improvement in tiredness 4 weeks ago and since then no change. When I last saw the RA nurse she said my inflammatory markers are now low so I was obviously getting better! (despite my platelets still being high and I'm in pain) She then wrote s letter to my GP saying Is said I felt very well!! So I wrote her a letter 2 weeks ago saying that wasn't the case but had no reply.

I called her today and said I'm miserable and in pain, so she's advised me to take 10mgs prednisalone for a couple of weeks then 5 msg to see if my pain is due to RA!

While I'm glad to be taking the prednisalone, this is half the dose I took in summer so I'm not sure if it'll help as it did last time and feel I'm constantly having to prove I have RA - is this normal or do I have a particularly unhelpful rheumy and nurse?

[sylvi]

I can't comment on your rheumy nurse,but i wonder do you have fibromyalgia if you still in so much pain darling.xxxxx

[Needforname]

Sorry to hear Barb. I'm in the same boat, but I'm on LDN and it's not working. It appears that it's not too uncommon for RA sufferers to also have other auto-immune diseases or ailments that may be contributing to pain. This could maybe explain why the drug isn't working for you. Then again, maybe it's just not a good fit for your body. It seems some folks have to change drugs until they find the one that works for them.

Have you been checked for lyme, lupus, hashimotos, etc?

[Barb66 in reply to Needforname]

Nice to know I'm not alone. I have hashimotos too but think the mtx dose needs increasing/ another drug adding. And worse everyone keeps saying to me how well I look, maybe it's the extra weight

[Needforname in reply to Barb66]

Oh wow. What made you or the doctor decide to test for Hashimotos as well? I mentioned this to my doctor and she didn't seem like it should be necessary to test for Hashimotos.

I too have people telling me I look good. I say "thanks", but what I'm thinking is "if only they knew how I felt".

[Barb66 in reply to Needforname]

Hi I developed hashimoto's a year before the RA reared its ugly head!

[Simba1992 in reply to Needforname]

How long have you been on LDN.

[Needforname in reply to Simba1992]

Hey Simba. Been on LDN 3 months (mostly at 4.5mg). I know for some people, it took 5-6 months, but most seem to notice benefits within weeks or a couple of months. Might have to reluctantly go on MTX soon. I don't want permanent joint damage.

[Simba1992 in reply to Needforname]

What kind of symptoms do you have? I have also heard that the effect kicks in slowly with RA from 4m on and is gradual. I have also heard that taking LDN with Mtx may give good results and enable you to get off Mtx gradually. I have been taking LDN for nearly a year now combined with AIP and supplements. I am not in remission since I still have pain and stiffness but my scores are down and I have no erosion. What i have understood reading this forum is that many on hard meds are in the same situation with the hard meds and addititionally suffering from side effects. I still feel i'm better off on my treatment protocol

[Needforname in reply to Simba1992]

Hey Simba. Yeah, I've read similar things you mention. Apparently everyone is different and they have to find the drug or remedy that works best for them.

My main concern is possible joint and ligament damage. I had some x-rays done 2 days ago and am waiting for the results. They may be able to see joint damage, but they can't really see ligament damage via the x-rays. When you mention "erosion", do you ever get your ligaments checked for damage, or do you just get x-rays every few months? Thanks.

p.s. I thought about going on MTX as well. It seems strange though to take an immune suppressant along with an immune enhancement drug. There doesn't seem to be much research on this combo either.

[Simba1992 in reply to Needforname]

LDN is not actually a immune system enhancer it works in two ways regulates the so called Treg cells that calm the overactive immune response and through this calms the so called glia cells in our CNS that are activated by inflammation and gives us all the pain. This way LDN has shown to decrease pain and inflammation in AI diseases it seems especially in FM and Chrons but also for many RA sufferers.

I take an MRI every 6m where everything abnormal is detected. So far so good.

Actually I have read that many that have been a long time on mtx without getting relief turn to LDN and can wean off mtx and other meds. Yes it's hard to know what works for you and you can only know by trying. This in my mind is the hard thing having to go through a long period of feeling ill and tired, not knowing if the med will help you or not and how much it taxes your body😳

[Needforname in reply to Simba1992]

Thanks Simba. I'll consider getting another MRI in a few months and will consider MTX as well.

[helixhelix]

Not an empathetic nurse! If the pain is coming from inflamed joints it can take longer for them to settle and return to normal after the blood levels have dropped, but you should be feeling some improvements.

If you are someone who responds well to prednisalone then even a lower dose will make a difference. And if it does then time to get assertive and push to get a review of treatment.

[Barb66 in reply to helixhelix]

That's so reassuring Helixhrlix last time I took prednisalone 20mgs it was like a magic pill, within 5 days I felt better than I had done in the last couple of years! Here's hoping then.

[Hidden]

Hi Barb - As near as I can tell, from what I've read and other people I've known, the pain and fatigue are the last things to resolve themselves with RA. Even though my blood work is almost all in range again, and the inflammation in my joints is reduced and mostly non-existent, I am still in pain, and I am still sleeping 10 - 12 hours a night. What is confusing to me is the doc making you to prove time and again that you have RA. AND what I don't know (maybe someone fully in remission like Amy Lee can tell us), is if they quit treating you if you are in remission.

I'm sorry you are going through all of that, and hope you get their attention soon.

[helixhelix in reply to Hidden]

Well I've been in remission most of the time for last 4 years and I still get treated. For example, last time I saw rheumy one knuckle was playing up, so got injection into joint. So 6 monthly appointments and 3 monthly blood tests.

Remission is different for everyone, but for me it doesn't mean it's gone just controlled.

[Hidden in reply to helixhelix]

Thanks - That was what I wondered..

[helixhelix in reply to Hidden]

That's why rheumies are so busy, they can never get rid of us and make more room for new patients as their patients lists just get longer and longer.

[Hidden in reply to helixhelix]

As scary as that thought is, it is totally accurate

[Joy_1]

Hi Barb

I agree with what Caery says about fatigue. It took a number of months of being on MTX before my fatigue went. It was not a slow improvement but it went quite suddenly over I think a 48hr period and that went hand in hand with the brain fog. It was like someone had suddenly switched the light on - I was totally overwhelmed!

As for the pain a big jump in Pred usually does the trick for me very quickly indeed. So perhaps that is the solution.

And finally inflammatory markers. Well they are totally useless in my case. Flaring or not flaring my markers have always been normal.

Joy

[Barb66 in reply to Joy_1]

Thank you Joy a voice of reason. And how wonderful your fatigue and brain fog lifted like that, I so gone ai have the same experience. I'm trying to write an email to work this afternoon and haven't got past 'hi there'!!

[Joy_1 in reply to Barb66]

I totally sympathize with regards to your fatigue Barb and trying to email work. Until you have experienced it for yourself folk just really don't have a clue what it is like.

Yes it certainly was a wonderful feeling when the 'lights went on'. All this talk of 12 weeks and the MTX works was true for me in terms of joint inflammation and pain but was certainly not the case for fatigue and brain fog. Hang in there, stay positive, I am sure it will come.

Joy x

[Simba1992 in reply to Barb66]

My fatigue and brain fog lifted also just like that, and this after 3 months on AIP and LDN. No RA meds.

[Karen77]

I was initially on MTX for 7 months with NO improvement and each day worse than the last. I only felt better once Humira was added to the mix. I thought the MTX was useless, and gradually reduced it over the course of about 9 months, after I had been feeling well for several months. Once I was down to two tabs (5mg), my RA symptoms started returning. They only went away again when I went back on MTX (25 mg), so apparently it *did* do me good. But all that is to say that it can take a loooong time and may need a boost from other meds to be effective. Good luck. And keep advocating for yourself, even if it's exhausting and frustrating!

Gentle hugs.

[Bandido]

18 weeks, months, and seems so short now. I never did feel right til I finally went up to 25mg and then the magic happened. I have been on that for maybe 9 years with a period off everything to see what happened. I am back with 25 and very little else. It works.

[A-Faye]

Hang in there if you can. It takes 3-4 months to start getting used to it and for real improvements to surface. I've been on it 2 years and am glad I tuffed it out. My exhaustion is now limited to 1 day and the sickness feeling is minimal. I continue to take Tramadol for pain. Hope this helps.

Alice

[Barb66 in reply to A-Faye]

Hi Alice thank you. I'm not the most patient person do it's good to hear it's worth the wait. Just one query though, if mtx is working do you still get pain?

[A-Faye]

It does help but I have a severe case and take meloxicam to help with residual inflammation and Tramadol nonopiate for pain. It takes a while for the methotrexate to do its job.