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First NHS rheumatology appt. Advice please!

Posted , 7 users are following.

jane82242
jane82242

I have just been diagnosed with sera negative rheumatoid arthritis by a private consultant who advised I should get into the NHS system (no private cover) and informed me I would be put on a combination of methotrexate and Hydroxchloroquine. I go for my first NHS appt on Thursday and am worried about the side effects of methotrexate - having read the discussions on this website! I'm pretty sure these are the drugs I'll be offered as the same consultant heads the NHS team I'm referred to. Does anyone have a good story to tell me about methotrexate? 

I know they like to prescribe a combination of drugs but can hydroxochloquine work on its own? It sounds so much safer....or could I ask for a combination of  hydroxychoraquine and sulfasalazine instead..... Is that ever offered? Are the medics receptive to patient's opinions/fears?

I have no idea what to expect on Thursday - any advice would be helpful.

0 likes, 11 replies

11 Replies

  • timothy11402
    timothy11402 jane82242

    Posted

    HI JANE:

    I too was diagnosed with sera negative RA 15 years ago. For the first year I took only hydroxychloroquine and in my second year started mix and have taken both together ever since. I have not experienced any side effects from other drug.

    My rheumatologist tells me that a very, very small number of patients have some sort of side effect.  My concern is the number of people who read the accounts in this thread are convinced they, too, are destined to experience the side effects that they read about here. We have to remember that those who regrettably have side effects are going to write to this site in the hopes of getting help and you, the reader, will get the impression that everyone who takes mtx has side effects. After all, the vast majority of us who experience no side effects are not going to write into this site to state they are not having any difficulties with their meds. So try the meds and see for yourself if you are having side effects. Chances are good you won't.

    Best of luck to you....

    Tim

    • jane82242
      jane82242 timothy11402

      Posted

      Thank you for your useful post. Yes I know that people are way more likely to post negative comments so I'm trying to keep things in proportion. Also good to hear from someone who has a GOOD experience of the drugs I'm most likely to be offered.

  • sukes
    sukes jane82242

    Posted

    Hi Jane,

    I can understand what Timothy is saying, that people who have experienced side effects with these drugs, will write to this site, but I can only say how Hydroxychloroquine affected me.  

    I took it for about 6 weeks altogether.  Within a few days I had a constant headache, I thought that would eventually wear off as my body became used to the medication. Then I started to feel very nervous, it felt as if it was an internal nervousness.  I had a sore throat and swollen glands, mouth ulcers and stomach cramps. I was itching and kept breaking out in welts on various parts of my body.  By this time I was on week 5 and realised that I was quite breathless, even when just sitting and then I noticed that my eyes where not focusing properly, which is when I made the decision to stop them.  I rang my Rheumatologist and she agreed with me.  

    I have not taken Methotrexate, so can't comment on that one.  Give it a go, you may not suffer side effects and you will soon know if you feel unwell anyway.  Good luck, I hope it works for you.

    • jane82242
      jane82242 sukes

      Posted

      Thank you for your post. What drug/s were you offered when the hydroychloroquine didn't suit you?

  • gillian_25383
    gillian_25383 jane82242

    Posted

    I am on methotrexate.Started on tablets but they disagreed with my digestive system so swapped to injections.The nurse teaches you how to do them and watches you do first one so can check have technique right.No problems so far although am off them for two weeks as am on antibiotics.

    Before being prescribed methotrexate they will do blood tests and do a chest Xray. Good luck and for the first year you will have monthly blood tests then go down to once every three months so they can pick up any possible side effects quickly.

    • jane82242
      jane82242 gillian_25383

      Posted

      Thanks for your post. Infections seem to be a theme with methotrexate!
  • syedq51
    syedq51 jane82242

    Posted

    Hi Jane I think before making up ur mind for anything u should wait for ur docs prescription. In my case I suffered badly for 2 years b4 my doc prescribed methtrxte and hydrochloride which I took regularly for 2 years. Now my dose has been tapered off.  Ur doc can also suggest alternate medicine if those 2 medicines dont suit u. So just wait and see

    • jane82242
      jane82242 syedq51

      Posted

      Thank you for your post, you're quite right of course I need to be patient! Did you have any side effects and how are your symptoms now they're been tapered off?

  • syedq51
    syedq51 jane82242

    Posted

    Hi Jane My joint pains and inflammation of different joints are under control say 80%. I reduced mthtrexate dose bcoze after taking it I had nausea and weared feeling like my heart is sinking and mild headache which continued for a day or two. Hyrochloride affected my skin badly esp my face became dark and scalp had dark and beige color spots. My skin bcame photosensitive.. Now I am on mthtrxte 4 tabs once a week divided into 2 doses. No hydro at all and in case of severe pain I tale one 5mg tab prednsolon on alternate days if needed..so this is my story. U have to try the meds and then adjust it according to ur condition.
  • blair97497
    blair97497 jane82242

    Posted

    Hi Jane

    I endorse Timothy's view. 

    I'm on hydroxychoroquine, and methotrexate via injection, as it was more effective for a lesser dose (now 20mg). 

    I have not had any adverse effects from the hydroxychloroquine. I vary a little in how I feel day to day and week to week.  

    After about 9 months I still have not established a strong opinion that the drug makes me a bit wiped out, or whether I should attribute this to ongoing RA symptoms. 

    My RA symptoms are overall otherwise greatly relieved, compared to how I was prior to treatment. 

    I did have a stint on sulfasalazine as well, but after a few weeks had to drop it due to nausea and a rash. But again, many people will be fine with it. 

    Everyone varies - you should not be too alarmed or prejudiced by what may be statistically insignificant reports of bad side effects.  While objective information is useful, individual stories here don't necessarily provide that. 

  • jo66120
    jo66120 jane82242

    Posted

    Hi Jane, MTX was the very first drug I took, the doctor started with a small dose and then as time went on he gradually increased the dose to the max.  I have been on MTX for 4 years and never has any side effects. I take the pills once a week.  My hair got thinner and I took Biotin every day and after several years it finally got a little thicker and slowed down the falling out.  Today I take MTX ( 10mg.) once a week and Oriencia a biologic. I have no side effects from either.  I have more side  effects from my blood pressure than the drugs for RA. They cause many side effects.  Take care, JO

     

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