Went on Friday see my consultant and told him about the symptoms been having bad tummy,joints feel like joints starting to swell, fatigue,sores in nose,feel sick with metal taste and rash gate on face which after last ingection burned and itches off. He said he was disappointed that we had stopped methertrexate injections as they are the best and he doesn't think my rash and side effects are due to the methertrexate, he thinks it's due to being still on 10 mg of steroids. I explained that I haven't felt right since being on the methertrexate but I kniw my joints are alot better than they were when I was in hospital at xmas but they ingected them before I came out and had also give me a steroid drip so I asked if my inflamtion could have been bought down by the steroids but he says no its the methertrexate and he thinks rash on face due to the steroids. He wants to put me on azathioprine but says it's not as good as methertrexate and to reduce my steroids to 5mg a day. I know I'm not an expert and there aren't many people to ask advice on stills but I can appreciate that in doctors eyes my inflamtion as come down so the drug must be working. Before I came out of hospital the doctor said they didn't think the methertrexate would work or might not suit me and he was considering putting in funding for anakinra, I hadn't heard of it and he said compared to methertrexate it's really good but we don't know if we would be able to get it for you. When I mention the anakinra now to the consultant all he keeps saying is we don't know if we can get funding and it's got lots of side effects, can get infections so easy.
Can anyone help I'm so confused feel like because I told them about my methertrexate and how I was feeling the consultant was disappointed in me, but I have been on it since end of December and I didn't ask to come off it but had to tell them how I felt. I thought he would perhaps reduce ingection but leave sterouds to 10 mg a little longer because he is now starting me on a new drug which the azathioprine seems to have more side effects but also reducing my steroids, so how will I know if I feel worse if it's the azathioprine or reducing in steroids. My partner said he thinks I should have stayed on the methertrexate longer and reduced steroids like my consultant wanted because he says I'm loads better which I am but I said what about all the other symptoms and I feel as though everyone thinks I shouldn't have said anything and just wish I hadn't mentioned how I been feeling. It's so hard and I have tried to stay positive but now my partner says I could back where I was, I said I wish I hadn't said anything and just put up with the side effects as now I'm worried that I'm going to be worse have got to go for counselling with nurse Thursday if I feel new drug sounds worse than methertrexate, have any of you changed your mind and stuck with methertrexate,I'm thinking maybe I've been hasty and should persevere longer with it if these other drugs aren't as good.
If anyone can give any help I know we all react different to different drugs nut feel like I've upset everyone and my boyfriend says it could be better the devil you know. Just hard as I was hoping to be back at work and didn't realise how much my life would change almost over night.
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bunker1
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I was in a similar boat to you only I did stick Methotrexate out for two years in total as well as trying two other DMARDs. I'm now 12 days into Azathioprine - which not many people on here take and is often used more for inflammatory bowel disease, autoimmune skin diseases, Vasculitis and Lupus than for RA.
It is a stronger immune suppressant than Methotrexate or others but not cytotoxic. I didn't qualify for the expensive Biologic drugs because my RA doesn't cause enough swelling in my joints- but instead I have severe nerve pain, flu like ache and fatigue and general unwellness, so Azathioprine seemed like the next logical step for me after 9 months off methotrexate and others.
I don't tolerate steroids well so have only had quite short periods on them and anti inflammatories have worsened my stomach issues so I'm having procedures and investigations for these now too.
So far Azathioprine has been absolutely fine for me - no nausea or skin issues or mood changes as other DMARDs caused me straight away. I passed my first weekly blood test with flying colours and my nerve pain and horrible sensory issues have all but died away. This could just be a coincidence or because of the high doses of pain meds and naproxen I was given for the recent flare up, but I'm not needing any pain relief just now apart from the odd ranitidine for indigestion. It's early days of course and I'm on the lowest dose for a few more weeks at least - but I'm hopeful that Azathioprine and I are going to become great pals!
We are all different of course but don't beat yourself up for stopping MTX too soon. Your partner and doctor aren't the ones affected by putting a drug into your body which makes you feel rotten. I hope Azathioprine works well for you and enables you to come off steroids once it kicks in.
will see what nurse says on Thursday when I have counselling. I didn't think that doc would take me off methertrexate I thought he would perhaps reduce dose it must be hard for them, when there aren't many drugs to choose from and unfortunately like most drugs they can all have not very nice side effects.
As I say same thing happened to me last year and I felt a bit forlorn too - especially as it led to nine months off DMARDs before I saw my rheumy again. There are lots of other drugs than Methotrexate to try don't worry.
If it's any consolation I had exactly the same side effects as you. Some turned out to be part of my autoimmune problems such as nose sores and skin issues but the nausea only worsened and caused sickness at both ends, even on injections.
Your rheumy would have had a plan for you when he took you off MTX. Think about it - they must see so many every working day that they probably develop good instincts for those who can't tolerate a drug and he probably wants to keep your RA in check more effectively and doesn't want to risk under dosing you on the wrong drug. Please don't blame yourself and good luck with the nurse on Thursday.
Hi bunker1. I only lasted 6 weeks on methotrexate tablets last year and Rheumy immediately stopped them. Fortunately I was still taking sulfasalazine and hydroxy. These were stopped 2 weeks ago due to side effects (2 A&E admissions and 2days in coronary care unit). I had persevered with the side effects, but alas they just got worse and hit rock bottom emotionally and physically and I could not work. Please don't berate yourself, if side effects do not settle down in a reasonable period, the chances are they will get worse.
It's finding the right balance between managing the RA and having some quality of life.
When side effects are worse than the disease itself - then change of drug regime is needed, it's not your fault. Our bodies are unique chemistry factories and no two people are the same. You, me and Twitchy have to kiss a few more frogs until we find our prince (although fingers crossed Twitchy may have finally found hers). It's enormously frustrating and takes time. The Rheumy wasn't blaming you, he's disappointed for you knowing that you've got to keep kissing a whole lot more frogs!
Please keep posting to let us know how you are doing and it will help newbies if they are unique like is and have to go down the 'kissing frogs' route.
I'm another of those that did not get on with methotrexate. I was persuaded to try it for a second time by an enthusiastic consultant, but even with working up from a low dose and then having injections, it did not control the inflammation and the side effects, for me, were unacceptable.
When you have a dentist commenting that the mouth ulcers are the biggest he has ever seen and that HE thinks I should stop methotrexate, coupled with an overactive gut at both ends, and brain fog so that my daughter-in-law thought I had early-onset dementia, you start wondering about coming off! I know that lots of people have no problems and are really successful with methotrexate but I wasn't one of them.
I have now been on azathioprine for around 18 months. I'm still tending to feel sick, but apart from that have no side effects and I am at last able to see my knuckles, my wrists and ankles are slim again and I have only wear and tear pain from having had RD so long. So I'm very pleased with my decision.
Sometimes I do think the health professionals underestimate how bad side effects can be & the impact they can have on your life. I went onto MTX injections because my Rheumatologist wanted to get my dose up beyond what I could deal with orally. The nausea & headache were horrendous & lasted all week. They were not improved by folic acid, calcium folinate, anti-emetics or anything else. I couldn't eat, sleep or think - and it got worse with repeated doses - not better. When I insisted on stopping & going back onto tablets I was made to feel like I was really lacking in moral fibre because 'the injections are usually very well tolerated.'
It's bad enough phoning in sick because of your disease. When you're phoning in sick because of the long term treatment, things are really poor!
We are all different & it is really important to find the thing that works best for you & that you can cope with. It can be really difficult to know what's helping/what's making things worse if they change more than one thing at a time.
The nurse is likely to have more time than the consultant. Why not write down what your concerns are, point by point & see if the two of you can make a plan that you are comfortable with trying? These people may never have taken anything stronger than paracetamol in their lives. To let them help you, you need to be clear and firm about what you can deal with & what you can't.
Best wishes for Thursday - hope the appointment goes well & you get something positive out of it.
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Help or a hug
Saw rheaumtoglist today 're taken of tramadol by pain clinic
Starting on azathioprine
Hospital visit.
