Medication Issues + Advice

Hi,

First time of posting on here but just wondering what opinions you may have as I'm at the end of my tether with seemingly no answers.

I was initially diagnosed with RA June 2013.

Started off with hydroxychloroquine. This caused major stomach issues and pain so moved onto Sulfasalzine. This dropped my wcc and neutraphils to dangerously low levels. So moved to Methotrexate tablets.

These caused what felt like ulcerations all down my throat and stomach amongst over things. This was combined with folic acid to aid my stomach. Then moved to Injected methotrexate. This initially helped my stomach a bit, but still very sharp pains in stomach and sides soon after each injection. Rheumatologist then upped the doseage! This obviously made the stomach and side pains even worse.

So to cope with this I stopped the injections for 3 weeks to try and calm down from it, which has started to relieve my stomach pains, but the joint pains are now becoming unbearable.

Saw the rheumatologist on Wednesday, went through all these details, and the answer is they've lowered the dose a bit, but methotrexate is my only option. So it's live with the side effects or live with the joint pain. Hobsons choice as they described it to me. As I don't have visible swelling to my joints I don't qualify for any other medication. As the joint pain was getting too much, tried another lower slightly lower injection last night, now today back in agony from my sides and stomach.

It's leaving me with unbearable pains in either direction. Pain killers are not enough, but obviously don't want to live on painkillers.

Is there something I'm missing here or do I simply have no other choices?

Thanks in advance for any advice.

Michael.

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27 Replies

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  • That's quite a awful place to be Michael. I've been seeing my Rheumy for 4 years now and he hasn't said that's it to me yet!

    So I suspect there are reasons he won't give you steroid therapy which is my normal standby.

    Maybe you could ask for a...

  • Where are you Michael? I'm in Scotland, was treated in England about six years ago. If you 'fail' on DMards like you have, they then have the option of trying you on biologic medications. You need testing to avoid further complications but look up...

  • My GP pointed out that steroids were just a sticking plaster. They will help with the inflammation. It'd be interesting to know why biologics are not being considered.

  • Hi Cathie, I'm in England (Cambridgeshire). Funding seems tight here! They didn't want to do Xrays or MRI stating it wouldn't be funded. I fought to get an MRI done on my back as I had severe pain in 3 vertebrae. I was told it would need to be...

  • Hi michaelminis,

    I have put a link below for you about how to go about getting a second opinion if you decide to go down that route:

    nhs.uk/chq/Pages/910.aspx?C...

    Regards

    Beverley (NRAS Helpline)

  • Hi Beverley,

    That's fantastic. Thankyou.

    Michael.

  • Yes I think pushing for a second opinion might help, as there are other traditional DMARDS that maybe would work better for you (Gold, Lefluomide and so on) but you need to have a rheumy that you can talk to. Also, perhaps push your GP to think...

  • Hi Helix,

    That's interesting you mention there are other DMARDS available. Do they have certain acceptance criteria before you can be prescribed them? The only thing I'm prescribed to help my stomach is Folic Acid daily except injection day. Are...

  • Hiya Michael & welcome. It sounds as if you're struggling not really being properly cared for by your Rheumy team, though your nurse seems to understand but is restricted by your Rheumy. Some look at the whole & listen to what their patients in...

  • Time to change rheumy if that is all they are telling you. There are many options to try and I think he needs to reassess. Have you had any steroid therapy? It seems very short sighted to be saying there is nothing more if that is all you have...

  • Hi Michael. I've been in exactly the same position as you for about 2 years now. Had failed to tolerate same three DMARDs as yourself - never had much swelling apart from hands when I was diagnosed in 2011. My rheumy says I have to meet the...

  • Sounds a familiar story to me! Having been unable to tolerate MTX and having had allergic reaction to sulphasalazine, hydroxychloroquine and gold, unstable BP leflunomide, and on steroids (for the bone marrow), I don't qualify for biologics...

  • Hi,

    Thankyou everyone for your responses. Very much appreciated. :-)

    I have managed to get an appointment with my GP later today, so I shall push for some kind of ppi, omeprazole hopefully.

    Does anyone else experience what feels like a stabbing...

  • Mine is all in my tendons and connective tissue rather than my joints too. I'm not quite sure why this is thought to be less concerning because surely we need these tendons to work as well and this thing has been attacking my peripheral nervous...

  • Ok, back from the GP regarding the Omeprazole. After attempting to describe the stomach issues I've been experiencing whilst on the mtx, he said "Well what do you want me to do about this? It's to do with the arthritis issue so will be the...

  • Do you have other doctors in the practice that you could talk to - this one sounds as he is avoiding anything to do the RA - perhaps rather frightened as he doesn't know anything about it?

    It is still the job of the Gp to deal with your other...

  • Yes he is definitely trying to avoid it like the plague. The problem with our practice is it's difficult to get an appointment with a specific doctor. It's a free-for-all to call at 8am and hope you get some kind of appointment for the day. If...

  • Michael, I'm having problems with the site, it's not showing responses & everyone's avatars are missing. I'm replying to your reply "that sounds like a good plan". I think maybe as you've lived in the village before & it's only just outside the catchment area they might just consider you eligible to join that Practice. You've nothing to lose by asking have you?

  • Hi, No problem.

    I tried calling them this morning. The receptionists initial response was "No, you are not in the catchment area, sorry."

    However, not content with giving up quite that easily, I've managed to find their direct email and formulated a communication giving greater depth and reasoning behind my request to see if they'll impart a little leniency towards me.

    As you say, I've got nothing to lose from trying so hopefully a little more persistance will pay off. :-)

  • No, that's a standard response. I hope you're successful. Did you direct it to the Practice Manager? It is really helpful if shared care is signed, but you know that from your present GP's reaction!

  • Hopefully it will go ok. Fingers crossed. :-) Yes, I directed it to the Practice Manager which will hopefully help. Teehee yes definitely have found out the importance of the shared care agreement. ;-)

  • I've had a quick response from the practice manager:

    "I was sorry and troubled to hear of your predicament. Indeed you do fall outside our catchment area, living as you do in ********. However, I would like to flag your email to the partners for discussion and I will get back to you as soon as we have had a chance to discuss the issue in full later this week. "

    Can't say fairer than that. Hopefully they will decide in my favour, but at least they are considering it. :-)

  • She's done as I would have, intend to add it to the agenda to be raised at the weekly partner's meeting. I say well done her, she sounds as though she's sympathetic to your questioning why you wish to join the Practice. I hope the answer is in the positive.

  • Unfortunately they declined my request to join their practice so my search is on to try and find somewhere else. Bit disappointed however at least they did give my request due attention and consideration.

  • That's a shame, but at least she thought to put it before the Partners. Good luck with your search, let us know if you're successful.

  • Following the Rheummy reducing the mtx doseage, I've been eagily awaiting the arrival of my new injections ready for Monday as I have them automatically posted to me. :-)

    Rang the pharmacy to see are they on their way as they haven't showed up online, it turns out the GP hasn't taken any notice of the Rheummy's letter to issue a lower dose so nothing has happened. Although the GP did finally prescribe the omeprazole he also didn't do something to transfer it to my electronic prescription information so its not available for repeat.

    Anyway....., just had a call from the GP surgery stating my pharmacy has requested the prescription for the mtx to be completed (as I chased them), he's said no, not until an additional blood test is carried out as the dose is changing.

    Ok...., so what am I missing, I'm on constant blood tests (monthly), the dose is reducing so what's the issue with prescribing a lower dose when it's been recommended from the Rheummy to do so? Now that means it'll be delayed as I have to get an additional blood test done, then wait for the prescription to be completed and receive the new injections. Somehow not convinced all that will happen by Monday! So come Monday do I take the higher mtx injection again and suffer the side effects or do I miss it and struggle with the ever increasing joint pain as I've already missed previous injections?

  • Hello

    Medications in the DMARD group of drugs can have severe contraindications, this is why you need to have regular bloods taken. Sometimes this will need the dose to be reduced or the means you take them will be changed.

    With me DMARDS do not work and all they do is effect my bloods and immune system, so now I have no choice as I am just unable to tolerate the whole group. When they find the medication that suits they generally give you an additional medications in the -TNF medications, group they work in conjunction with the DMARDS.

    Generally RA is an immune system problem where the body attacks the bone and joints so the medications above reduce the damage and slow down the immune system. The problem is you can have problems and the immune system becomes not as efficient so it becomes Hobsins Choice and in some instances the the patient can run out of options. They will generally not give the -TNF without the DMARDS so they end up in my case keeping me stable with Opiate type medications and NSIDs that reduce the swelling of the effected joints although sad to say will not stop the damage I suffer from.

    Depending on your condition or the joints effected they can await a remission when taking the DMARD etc, then they may give a reduction in the doses of the DMARD type medications. Of course a remission is possible in treating with NSID and pain killers with the use of an antidepressant such as Amytryptalene if nerves are trapped or effected by swelling and damage.

    All I can suggest is that you talk with the Specialist and RA Nurse regarding your medications etc as I cannot tell you what is the best way forward as I am a patient myself. If you decide to go against taking these groups of drugs and they feel you are in remission they can discharge you from the RA clinic, that has happened to me as I became very ill and I just could not carry on, all I can say is that patients can in some cases be on these drugs for many years, my basic immune system now seems stronger than before as I was suffering more colds etc when I was taking them.

    I do not know if this helps you, all I will say you have to consider your contraindications as there are about ten different medications that I know of in the DMARD group. They generally as mentioned earlier will not give the more expensive -TNF if they cannot use it with the former. Dmard type medications were used in the treatments of cancer type illnesses.

    BOB

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