At the end of my tether 😢

[Lauranorder]

Any advice or tips please.

I got diagnosed with RA on 17th September. On 2nd October I took my 1st dose of Methotrexate. That night I went down with acute tonsillitis and uvulitis. I ended up on penicillin and antibiotics so the Methotrexate was paused. At the same time I had a burn on my arm that became badly infected too. Then 2 weeks ago I got a nasty infection in my eye. Again the Methotrexate was paused while I was on antibiotics. At that time my GP signed me off work for a week, saying I was totally run down and needed to rest. After taking his advice, I felt much better and went back to work. Now today I’ve gone down unwell again. I have a really sore throat and it feels like my sinuses are inflamed. I’ve always been so proud of not being a sickly person but now I’m beginning to think when will it all end?

Is this anything to do with RA?

Also does anyone else suffer with constant mouth ulcers? I’ve had them constantly for 2.5 years now, again is this anything to do with RA?

Sorry to winge on, but I really am reaching the end of my tether, as I suspect my boss and colleagues are too 😢

[SoulmanPaul]

You have my sympathy...had a few infections since starting on in my case Humira. Currently off it due to a chest infection and flaring due to stopping my drugs. Mouth ulcers are commonly due to Mtx not your RA and you should be taking Folic acid to counteract this. Like many I initially took Folic acid the day after Mtx but increased this to 3 days due to mouth ulcers. Some people on higher doses of Mtx take Folic the other 6 days of the week though so it depends how bad the mouth ulcers are for you really. If I was you I would speak to your Gp or Rheumy about increasing your dose of Folic acid and hopefully that will sort things for you.

Kind regards

Paul

[Lauranorder in reply to SoulmanPaul]

Thank you Paul.

[SoulmanPaul in reply to Lauranorder]

You're very welcome. Just bear in mind that most of the meds we take lessen our immunity to infections. It might be an idea to try a lower dose of Mtx...ask your Gp. If you're regularly having to stop your meds you're not getting the best from them anyway.

[Lauranorder in reply to SoulmanPaul]

This is all so new and such a mine field. You take drugs to help the RA but then the drugs create there own problems. I hate all this 😥

[helixhelix]

I think you've been in the run up to diagnosis for a year or so now? So a year at least for your RA to run riot, and for you to be super stressed about it all? I think your doctor was making a big understatement about you being a bit run down?

RA to me goes hand in hand with weird reactions, as your immune system is totally out of whack and does odd things. For me it is infections around the nails in fingers and toes....

Try to really rest and care for yourself - vitamin packed fruit & veg, sleep, amythimg calming. Have you talked to your boss about this? As they have a duty to help if they cam.

[Lauranorder in reply to helixhelix]

Thank you helixhelix. In fairness my boss has been very understanding but you do worry just how far the patience will go. I’m going to take your advice about getting all the vitamins and rest I can. I’m also considering seeing a nutritionist.

The ulcers are really getting me down ☹️

[marie66 in reply to Lauranorder]

Hi get anbisol liquid from the chemist it’s £5 and last ages. It numbs the area with the ulcers and really helps! M x

[Lauranorder in reply to marie66]

Thank you marie66. I have got ulcer numbing medication but I have 8 - 12 ulcers all the time and it would involve numbing my entire mouth. I tend to use it on the ones giving me the most trouble, normally the ones on the end of my tongue. What I really want is to find out why and hopefully stop getting them 😛

[marie66 in reply to Lauranorder]

It was the methotrexate that caused mine and it did settle a bit but I still get them sometimes. M x

[Parker16-]

Hi so sorry to hear your going through this stage I have been there and still climbing our big hill but feeling like I am getting there but with RA it changes so much from day to day too. I was on the same table as you but my liver could not take it in the end so I had to come off them. I always had really bad throat and could hardly swollen at times. I did take the acid tablets with them but still didn’t help but helped with the sickness. I still got lots of mouth ulcers. Anyway after lots of months off them and being to frighten to try another drug I did as I could not walk in the end. I had to have a two month steroid boost on tablets I was so glad of that I can walk again. Now I have started my new drug and I feel ok on them . No sickness not too bad with the throat. Honestly when you get there you will feel so much better. Not everyone can tolerate your drug so sometimes it’s time to try another but you will get one for you don’t feel down speak to your hospital and be strong as they are not the ones suffering.

Keep in touch we are all here for you

Pam x

[sylvi]

You haven't been on the mtx long enough to feel the benefits of the drug. You have my sympathy darling as it is only early days yet for you. You must be really run down and i don't think a week off work will cut it for you at this time i think you will need longer of work darling. What dose of mtx are you on? i ask because there is the mtx metroject pen that you can take with antibiotics and ask your rheumy about it as you need some help. Hugs anyway from me.xxxxx

[Lauranorder in reply to sylvi]

Thank you. I’m on 20mg every week

[sylvi in reply to Lauranorder]

May i suggest you contact your rheumy.xxx

[Matilda_1922]

It’s amazing how you are different things that folic acid works. I was told it eases nausea which I suffer with for 2 to 3 days on and after methotrexate day. I take 2 day before and day after and for 5 days.

I’ve had a sore mouth last 2 days unable to eat food but can drink cold fluid

[Hidden]

I take Folic Acid for 6 days of the week, every day except for MTX day on my rheumy's advice. This doesn't always make any different, so I've tried Vitamin B complex, whic includes Folic Acid.

[Juliachoo]

I had the same reactions as you... I was on oral MTX & 1 folic acid a week... they upped the folic acid to 6 days a week & because I was so nauseous I went on the MTX injections which stopped the nausea.. I have now been on the above plus sulfasalazine for 18months but think that it’s losing its effect at holding the flare ups at bay...hope you feel better soon this rotten disease is very hard to cope with particularly in the 1st 2 years.. xx

[Lyneal]

Hi, sorry about your infections, I have been off MXT for a month now because of recurring eye infection, mouth ulcers have settled down now, but all in all not much fun is it.

[hatshepsut]

I get terrible mouth ulcers with MTX. The best cure for them is difflam mouthwash.....it's absolutely great. I get it on prescription.

Sounds as if you have been thoroughly run down hence the bugs getting such a hold. Don't despair, once you are able to take your MTX regularly, it will gradually kick in. If not, there are alternatives.

Take care.

[Lauranorder in reply to hatshepsut]

Thank you thank you thank you.

I meant to come back sooner but life got in the way. The day after you posted this comment I got my GP to prescribe it for me. Not only did it clear up the ulcers I had within 2 days, I haven’t had another ulcer since. I can’t thank you enough for the recommendation xxxx

[hatshepsut in reply to Lauranorder]

I'm so pleased for you. I know how awful mouth ulcers can be!!!

I always keep a bottle of difflam to hand, and at the first sign that the y are creeping back, I use it....and usually only have to do it once or twice.

Thanks for replying, it's always nice to know that you have helped someone else...and if you encounter anyone else with the same problem, you can pass the tip on. xx

[VeronicaF in reply to hatshepsut]

that's handy to know hatshepsut