Ive give in.....i got a phone call.....eventually!

Well after my last appointment and my major moan i did actually get a phone call!!

He was lovely (even though ive never met him before)

He actually explained ra, medication and side affects. I told him of my fears & worries that i had never actually had anything explained just told 'take these' and he was very sympathetic.

Told him everything and he actually said if you are not happy, feeling bad side effects or worrying to ring and ask for him.

He did say my side effects could subside (aching muscles and horrendous stomach pains) but if they didnt in 2 weeks, when i next get my bloods done i can come off leflunomide and have steroid injection till they sort something else out.

Question is....i cant tollerate mtx and now leflunomide or oral steroids...what else is out there for me?

Xxxxc

5 Replies

oldestnewest
  • HMM jossie

    looks like you are in a delema not knowing which way to turn

    i think i would go with give it a try and keep an eye on it

    nowt else you can do

    hope it works out

  • i had all sorts of side effects for the first couple of months of taking drugs....headaches, rather violent stomach upsets, nausea, etc etc but they all slowly went. So that could also happen for you too. not pleasant while it lasted, but am fine now.

    However, if Lef doesn't suit you then don't worry as there are lots of others. MTX and Lef are the ones they try first as these have been shown to be most effective in most people. But for some people there are other traditional drugs that work better, such as Sulpha, Hydroxy and even Gold injections. And then if those don't suit you there are the modern biologic drugs, and they're about 12 different ones of these.

    Px

  • Hello Josie

    I am so sorry you are struggling so much. As has already been said there are lots of other meds out there. I too am unable to tolerate either mtx or Leflunomide but I have had many, if not most, of the other DMARDs over the past 17 years and all have been helpful to some extent. And mtx and Leflunomide were the only ones which gave me any side effects at all (bar sulphasalazine and that too was absolutely fine once I got used to it.) Unfortunately it can be a real roller-coaster finding a combination of meds which suits but I hope things improve for you very soon.

    Thinking of you.

    Tillyx

  • Hi Josie

    I am glad you are getting somewhere. There are other newer drugs I am now on the TNF drugs that cap your immune system instead of wiping it out. I have been on Cimzia for over 12 months as it does not have to be topped up with the nasty Mthx.. Cimzia is fantastic no side effects except for an aching for several hours after the injection. And fewer chest infections etc. The only thing you have to watch is possible sinusitis, however i take a steroid nasal spray to prevent this.

    Hope things improve for you. Take care. Sharon

  • Poor you, it is a roller coaster ride in the beginning. It took the team to find the right drug for me but Enbrel was the one that worked for me and I think I went into a medical remission. Enbrel is one of the anti tnf drugs as there are several out there. It is worth speaking to your rheumy team about them and the option of trying them if other things aren't working for you. I couldn't tolerate the other drugs including methotrexate due to nausea and other stomach problems.

    I hope they find something soon that works for you. In the meantime I hope the steroid injection gives you some relief. I'm having a flare myself so can sympathise with you. It's not nice at all but things will improve once they find the right drug. Take care and good luck.

You may also like...