Newbie Me involved with Metho..please suggest

General
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Hi All. I have been reading this site for a few months. Every time I needed info…boom! There you were! :slight_smile: Kinda thought if that’s the case, maybe I should join.

I have been diagnosed with Sero-negative RA Psoriasis Form Arthritis, Fibro and autoimmune issues, can toss in anxiety too. I was blessed with an RA doc that believed me about 10 years ago. I am now 55 yrs old, retired (due to illness causing me to be very, very, very ill) Since then I have been on numerous meds - lots that have been listed here. Currently I’m back to metho (or is that MTX?) but instead of pills, doing injections 8ml once per week. I know it’s not a lot. I have been on injections since last October 2017. (about 6 months)

I have a blog that I ramble on - https://spiritweigh1.blogspot.ca. I talk about my RA, pain, life, and weight issues. Weight and mood is a big issue for me, and RA meds really cause those two to go screwy at times.

I am finding my injections really causing me issues with fatigue, crying, weakness… and I don’t know what to do. That’s where I would appreciate any suggestions. Prednisone helps, but again definitely don’t want to take that a lot! I have stretched out my injections per the pharmacist to between 10 - 17 days. I find by about day 11 or 12 I need to inject. When I do my injections I end up with about 4 days that basically wipe me out - fatigue, weakness, short of breathe at times, and worse of all: sad and hungry. But I’m not really hungry, I eat because of the sad and tired. I have had YEARS of weight issues, so I know the stories of what to do and not eat, which in a Metho fog is so disheartening and sadder for me.

Is there anything I can be informed with, suggest, try again, etc as I will be going to my wonderful RA doctor March 28th. I’m almost ready to suggest to her again, let me off the Metho and give me the summer with Advil and Prednisone.

Thank you all for reading. I’m glad I found an amazing, supportive group.
Ta

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Hello there.

It’s a little confusing … RA and Psoriatic Arthritis are different beasts, is it the case that your rheumy isn’t yet sure which one you have? I think it is quite reasonable for rheumys to hedge their bets for a while, seeing as the treatment for both conditions is basically the same. But I’ve never heard of Sero-negative RA Psoriasis Form Arthritis. Just to further complicate the issue though, people can have both!

The other thing that could be a little confusing is the horrible feelings you describe: fatigue, crying, weakness. Well, unfortunately those things can be caused by Psoriatic Arthritis and RA. Yet I hear you when you say the symptoms seem to come on after you take Methotrexate, which can also cause the same sorts of things.

If I were you I would want to clarify the diagnosis if at all possible. But also to get the disease well under control. I think that is unlikely to happen if you’re spacing the injections out beyond the recommended period. I would imagine / guess that you might be experiencing a muddled old mixture of inflammatory arthritis symptoms plus side effects from Methotrexate.

I think you’re going to have to put all of this to your rheumy and ask them to do their damnedest to untangle it all. Again, just my personal view, but I’d probably take the Mtx at the right time in the lead up to that appointment, just to see what happens. That would be tough, I know.

There are alternatives to Mtx which your rheumy might want to try. But it can be quite a good drug for those who tolerate it so it would help to be 200% sure that what you’re experiencing is due to it rather than to the disease. You know, inflammatory arthritis is depressing on many fronts and it appears that it can actually cause depression, as well as being depressing. That alone is an important reason to get it under the best control possible.

Oh, and are you drinking loads of water? It’s a simple potential remedy for Mtx side effects, but essential.

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Hi Catt, and welcome!

I noticed you didn’t mention any biologics. Have you had them at all? I’m thinking they could be your next line of defense against the disease! A high percentage of people have good luck with biologics…

Sybil has lots of experience with MTX, and her advice is helpful…hang in there!

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Hello there Catt

I second everything that Sybil says, and I’m just so sorry that you’re so deep into this struggle. It’s great that you finally joined us: we’re glad to have you!

It’s late, and I’ll just point you to a piece of reading that may put some of what you’re feeling into perspective: Not just joints and tendons: PsA can affect your brain too.

I think you’re going to have an interesting discussion with your rheumatologist. I’d definitely be exploring the possibility of biologic therapy with her, as GrandmaJ suggests. We’ve had a fairly recent discussion about biologics that you should read if you haven’t come across it already: Afraid of biologics

Again, a warm welcome to you Catt: we’re glad that you’ve come out of the shadows and joined the conversation!

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Hi Catt,

And welcome from me too. And yes I’d definitely get this diagnosis sorted out so it’s far more clear. I was diagnosed with PsA. It hit me like a car crash, fast and horribly. Then a year later I became RF positive. But my rheumy is still clear I’ve got PsA and I agree with her. And anyway as Sybil says the treatment for both especially initially is practically the same. So then at that stage it didn’t really make much difference.

I was initially started on mxt tablets. And couldn’t function after the first dose. So I threw all my toys out the pram and had a tantrum for about a year. Then saw my present rheumy who took everything on board and got to me start mxt by injection this time. After the second injection, I couldn’t function again. So I was told to simply stop it as clearly the side effects were worse than my disease.

So then I started on sulfasalazine and worked up to the normal dose of 4 tablets a day. Things improved but not enough. After 4 months I was put on 6 tablets a day and within about 10 days things were immeasurably better. That was last October and things continue to remain pretty good. And I feel incredibly fortunate that I got barely any side effects from sulfasalazine.

So my first question is what is the point of taking such low dose mxt injections and spreading those out so far apart? How is that therapeutically sensible? And given you have such a horrid reaction to mxt why are you persisting with it? Most especially given the huge range of other drugs to try which first might help so much better and secondly actually make you feel a lot better?

The thing with anything autoimmune is to slap it with something that makes it want to behave more normally. Once you can get your immune system at least trying to behave somewhat more normally things amazingly do improve. But to do that you need to be persisting in getting therapeutic doses of whichever med is next. And there’s a serious amount more drugs to try than just mxt and prednisone. I’m so glad that my days of either or both of those drugs are long gone.

As for the weight and anxiety issues I hear you loud and clear. Prednisone never helps with either. What helps me with at least the anxiety issues is good old drug free talking therapy and I’m hoping that might start to help with the weight issues soon too.

But certainly getting rid of the mxt and the prednisone and getting on to a drug that presently works for me along with some talking therapy and I can quite categorically say I have life presently with lots of capacity (one would always prefer to have more though) which has fewer mood issues and a lot more fun. And I’m 56 and have no financial capability to be able to retire yet and frankly I don’t want to anyway.

I think your rheumy needs to be clear what your diagnosis is at least on the balance of probability and I think you need to be taking coherent therapeutic doses of meds, giving them a decent shot to see if they’re working or not and if not move swiftly onto the next one. With the aim of trying hard to get your immune system to want to behave more normally. It’s only in that way have you a chance to halt or at least slow down any autoimmune issue and that at least has to be goal doesn’t it?

Big hugs and best of luck for your appointment on 28 March.

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Welcome!

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Thank you all for your welcome and info. I was very surprised about there being a difference. I guess I never really asked as I assumed it was all in one. I WILL clearly be asking her on that. I’ve read up and found too that one can have both, but not usually. So until I know, I will leave that.

I’ve been trying to do the MTX because I have been on so many other pills that I really can’t handle as well as MTX and Prednisone. When I went in last October, I did ask her about Bios and she was willing to put me on them, but… $$$$$$$$$$$$$$$$$$$$ means I need to be on MTX and show it’s not helping to get a chance of it being covered. My hub is disabled (so on Old age only) and I'm on disable/retired so not much . For me to go Bio I need it being covered. I really don’t want to go around on the pills I’ve been on already with bad reactions.

That being said, I really, really appreciate all who made suggestions - they have helped and I’m grateful. There is a lot to digest in there too. And water! ha ha ha. That I will be doing - besides it’s on my weight issue suggestions too. :slight_smile:

I think I’m just worn at the moment and struggling to be a good girl with meds. It has taken me 2-3 years to be willing to do bios - she suggested them years ago and I freaked out. In October I told her I was in so much pain - I’m willing to do anything. She looked. I said ANYTHING… even Bios. She looked, said you really must be in pain. And explained the route I needed to go if I was wanting them. I’m still in pain, but not as bad as then, it’s the loss of 4 days a week that I can’t handle anymore along with the aching pain.

I have taken about 25 different meds relating to the RA/PsA. (some for just pain or sleep) I’m sure that’s not a lot compared to others, but for me a lot.

Thank you again - I will let you know what Doc says.

Ta!

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I don’t understand why all the pills you were on before and the years of mtx isn’t enough to say it’s not working… You already failed what is she waiting for?!

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Catt, in the UK, the protocol for starting biologics requires that patients have tried and ‘failed’ 2 traditional DMARDs (i.e. Methotrexate or Arava or Sulfasalazine etc., there are a few). But sometimes what isn’t clear is that not being able to tolerate one of these drugs also counts as a ‘fail’. I wouldn’t be surprised if that is the same where you are.

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Ah, some of the meds were to help me sleep, depression, anxiety, or just for pain - like Ultram. Problem was for almost 3 years I wouldn’t agree to biologics so that didn’t give the doc much to work with. And a few I wouldn’t do more then one week because of side effects. So I was a very difficult, unwilling patient - to an extremely kind, patient, caring Doctor. Now I am in more pain, and see I need to deal with it. Years ago I thought I could manage without meds etc. and do just alternative therapies. It was me, not her.

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Wow, Catt, that’s a big, brave call (I mean the statement that it was you, not her). Good on you, sounds like you really are ready to move on to the biologics now, and I hope they’ll do as well for you as they have for so many of us here :grinning:

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thanks Jen. Will see at the end of the month at what happens. I have booked with my family doc to get the TB test next week. That is one of the requirements before starting bios. So I will have the report ready for her too.

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Well done you Catt. Here’s hoping. x

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