Off meds because of Shingles, but maybe answers to ot... - NRAS

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Off meds because of Shingles, but maybe answers to other concerns…..

Hollyhock123 profile image
24 Replies

So about 18 months ago I started feeling nauseous occasionally. Moved taking my mtx tablets to the evening, and upped folic acid from 1 a week to 3, then 5. Not making much difference so moved to mtx injections. Still feeling nauseous but RA team reluctant to pin on Mtx as nauseous is generally after the 24 hrs period. But, just had shingles and came off mtx and Benepali. Back on them, benepali on Saturday, fine. Mtx injection on Tuesday evening and 24 hrs later feeling ‘off’ and today just feel bleugh and a nagging sickness feeling.

Have rung RA nurses asking for a call back…

Having shingles wasn’t pleasant, but this near constant sickness is depressing and really can’t entertain that long term any more.

Another bonus of shingles seems to be one of the pain meds for nerves. I usually have terrible nerve pain in my toes, then reading a post on here this morning about toe pain, I suddenly realised my toes and feet haven’t been hurting, aching. Hmmm, wonder if I can keep some level of that pain relief going?

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Hollyhock123
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24 Replies
Amnesiac3637 profile image
Amnesiac3637

I can sympathise with the Methotrexate nausea. I have had RA for 33 years and MTX was prescribed as it always is at the beginning of the long list since. I loathed it! For four out of seven days I felt nauseated, foggy-headed and generally foul. By the end of the week I could function again but then I had the cycle all over again. Changing to injections didn’t help and having folic acid didn’t either. I’d rather have put up with the RA than live (or not) in that state.

After three years of misery I put my foot down with a firm hand and refused to have anything more to do with it. As soon as it was out of my system I felt immeasurably better and have never had to have it since.

Many of the newer drugs work without having to have MTX alongside them and they don’t make you feel like a foggy headed zombie. You don’t have to have any drug - it’s your body and if MTX is making you feel as you say then ask to change to something else. Many people on here have had the same symptoms with MTX and the nausea is def not confined to the first 24 hrs.Of course there are many who do very well on it but we’re not talking about them.

With regards to your relief from nerve pain, you may very well have had Pregabalin or Gabapentin or a similar, for the post-herpetic pain of shingles and that will have worked on your feet. Worth asking to see if you could have a longer course. Good luck and hope you get some relief soon!

medway-lady profile image
medway-lady in reply to Amnesiac3637

Bearing in mind that Pregabalin is addictive, I don't know about the other drug but it me months to come off pregabalin and it wasn't easy.

Hollyhock123 profile image
Hollyhock123 in reply to medway-lady

aware of that, but GP would rather that than cocodamol which I’ve been on previously and wasn’t really touching the pain. Will monitor. Thanks for heads up

Hollyhock123 profile image
Hollyhock123 in reply to Amnesiac3637

Thanks, got the repeat for pregabalin. I’ll see how that goes. Hospital reluctant to reduce or switch mtx at moment. GP going to change HRT meds see if that makes a difference 🤞🏼

Flipper12345yellow profile image
Flipper12345yellow in reply to Hollyhock123

Hi, do hrt meds affect our ra then ? I'm thinking of starting on it. Thanks

Hollyhock123 profile image
Hollyhock123 in reply to Flipper12345yellow

I don’t know the answer to that I’m afraid. When I spoke to my rhuemy team before starting it they had no concerns with me being on HRT, and some say it has even helped ease RA symptoms. More research to be done. But I would just liaise with your RA team to check.

BeachsideVia profile image
BeachsideVia

Hi! Pain in your toes may be peripheral neuropathy. 8 years ago I had Breast Ca and 2 rounds of chemo, and radiation and a double. For all these years I have been trying to cope with the pain and numbness ( my RA was there before the CA, but took a back seat)

I tried gabapentin, tramadol and nsaids. Pain meds lead you down a road of endless problems, in my case. I finally went back on Cymbalta (duloxetine) and it works! (For neuropathy). Now this past year I am experiencing the RA decline. Tried hydroxychloroquin, helped a little then quit. Now on 3rd week of MTX after a bad flare up last month. Had flare in ankle 3 days ago, lasted one day! I am so very hopeful about MTX. I exercised in the pool 4 days ago and probably over did it. Reading the posts help me and reinforce the rule to not over do it!

Hollyhock123 profile image
Hollyhock123 in reply to BeachsideVia

oh no, that’s tough. Hope it works for you 🤞🏼GP has given me a repeat for pregabalin so I’ll see how I’ll get on. I have to say it’s quite nice not having the painful toes. I’ll see how I get on it longer term. I was another NSAID for 15yrs, and had to come off pre op and managed that with no withdrawals so hoping I’m ok with this drug.

Bhasvic64 profile image
Bhasvic64

Hollyhock123 used to be on methotrexate now rheumatologist taken me off it . Take care.

Hollyhock123 profile image
Hollyhock123 in reply to Bhasvic64

Thanks, I’ve been on it so long, RA team seem sure it’s not that, I’m not convinced but it’s on the radar with GP too, so at least it’s being monitored. Having extra bloods done as a check too.

Shyandretiring profile image
Shyandretiring

Hi Holly Not good that your feeling nauseous.

When I changed from tablets to injections the RA team advised me to increase my water intake the day before and the day after injecting mtx .

The amount I drink on those 2 days is 3 litres which sounds a lot but with tea intake ( for me anyway ) I can reasonably meet that especially in the summer when it is warmer.

It is worth trying, because it definitely works for me.

All the best

Shy&retiring

Hollyhock123 profile image
Hollyhock123 in reply to Shyandretiring

Thanks, I drink quite a lot but definitely less during the cooler months. Will start using my water bottle again and monitor. Thanks for the suggestion.

Aperson99 profile image
Aperson99

Sorry you are feeling like that. I take 15 mg MTX and Benepali. I take it Sunday morning, by lunchtime I feel hungover and nauseous. I take it easy and try and have a nap. After I take 2 paracetamol for symptoms. Hate it. I lose half of every Sunday. But I would never change it as the drug helps me. With PsA consultant told me it has a supportive effect to the biological. If I don’t take it, the Benepali does not work and I have permanent flare. If I take max dose MTX only, that does not work. But this is quite likely different for RA or other similar conditions, so it’s worth getting some time with your rheumatology team and hopefully they can make something work best for you. (P.s I take 5 days of folic acid and does nothing to relieve symptoms).

Hollyhock123 profile image
Hollyhock123 in reply to Aperson99

Feel similar in the positives it has, but having not felt nauseous whilst had to stop taking it, and now all starting again, I’m not enjoying the prospect of that feeling again! Paracetamol does help me too. So maybe that’s the way forward 🤷🏻‍♀️ GP is going to adjust my HRT as that may be cause. We’ll see!

Boxerlady profile image
Boxerlady in reply to Hollyhock123

Just to say that one of my worst perimenopausal symptoms was nausea; I've never had kids but when I described it to friends who had, they said that it sounded just like morning sickness but unfortunately mine was constant! Getting my HRT right eventually sorted it but until then I found that ginger and peppermint (in all forms) and making myself eat regularly helped and interestingly, the same tricks have helped when I've occasionally had nausea with my DMARDS; thankfully it's never been as bad or as constant than when it was hormonal.

Hollyhock123 profile image
Hollyhock123 in reply to Boxerlady

That’s interesting, thanks. My RA was triggered in childbirth and I’ve had many conversations around these reactions being linked to the menopause. With such a lack of research in this area I suppose I’ll only know or think it was all connected when I’m through this stage! My first drink of the day is a herbal ginger tea!

Thebill21 profile image
Thebill21

Hi Hollyhock123I've read your questions about Benepali & reactions. I'm on Benepali & have been on this for almost 2 years & I've not had any reactions. I'm also taking Sulfasazine which I'm reducing. It's really helped my RA. I know that all the Rheumatology teams are very busy & Covid hasn't helped. Have you thought about speaking to your GP whilst you're waiting for your Rheumatology appointment. They maybe able to help or at least suggest something.

I hope you get some help. Take care.

Hollyhock123 profile image
Hollyhock123 in reply to Thebill21

I came straight off sulfasazine when I started benepali. My GP practice is good, and I actually had an appointment today. My RA team want me to try adjusting other meds before adjusting mtx further. It’s difficult to pin point, but think nauseous started at a similar time to going on HRT. So GP going to follow up that route for alternatives. Wait and see!

Thebill21 profile image
Thebill21 in reply to Hollyhock123

Hi Hollyhock123So pleased you were able to see a GP at your surgery today. You seem to have a lot to contend with with your health. How awful for you. Hopefully, your GP & Rheumatology team will be able to find a way to help you. We all take medication to help with a problem & they cause another problem. I'll keep my fingers crossed for you that you'll begin to feel more comfortable very soon. Take care

MJSlide1958 profile image
MJSlide1958

Sorry to hear this. Please ask your Rheumy if you can take 5mg folic acid every day, but not on Methotrexate day. Good luck

Hollyhock123 profile image
Hollyhock123 in reply to MJSlide1958

I do that with folic acid already, and unfortunately not made any difference 🤷🏻‍♀️

MJSlide1958 profile image
MJSlide1958 in reply to Hollyhock123

I think you may have to get advice from Rheumy to change to a more suitable med. Good Luck

Jillyanne profile image
Jillyanne

I came off MTX, awful sickness with tablets and injection, honestly you dont have to suffer , there are other medications for RA , it’s just that MTX seems to be the cheapest 🤷‍♀️and there go to product

They don’t like when you ask to come off it but you have to insist ,good luck 🍀

Hollyhock123 profile image
Hollyhock123 in reply to Jillyanne

Yes, I know. I think as I’m been on it for so long and not had reactions they want to just be sure it is mtx before making changing. The hospital RA team are being very supportive 😊

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