My Rheumy has added to my diagnosis of GCA/PRM , Seronegative Inflammaroty Arthriis and Fibro .....
So although uncomfortable, I was down to 5.5 mgs preds, my ESR was up so I was told I must go up to 7mgs - which I have and this has made no real difference to pain in my body. I did have temple pain following a holiday and virus so went up to 10mgs for a week then back to 7mg. I h ave been told I must stay at 7 and not reduce until I see her again in 3 months.
I am constantly fatiqued.
My problem is that they keep trying me with addiditonal meds, Methotrexate, Leflunomide, Azathioprine and now Sulfasalazine. Each has given me awful side effects, headache, upset stomach and Nausea. I have just stopped the Sulfasalazine have had a headache for two weeks and the last two days like a severe migrane, plus nausea, I stopped the tablets and within 24 hours the headache had subsided.
I was prescribed Amitriptyline (20mgs) but can only manage 5mgs a night without feeling completely depressed (even though it is an antidepressant) and spaced out.
So my question is, has anyone tried all these tablets unsuccessfully and eventually found one that suits them. Each time I go and see the Rheumy I have another course of tablets prescibed, I try to be positive, but the tablets should not make be feel worse.
Would be grateful for any opinions or advice ....
Many thanks
Written by
lesley2015
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I am sorry to hear you have been dx with additional conditions but that doesn't make you a failure. It's not like you chose to have any of them and you should have treatment where possible.
It's sounds like it is an illness too far and that can be very very difficult to take on board. It sounds like you need to seek the help of a counsellor to go through your feelings about these illnesses and the impact they are having on you. When I was diagnosed with diabetes and fibro in a short time I saw the psychologist and physiotherapist attached to the pain clinic I was referred to. I had "talking treatment" later supplemented by Cognitive behavioural therapy which in the long run has really helped.
I have no experience of the drugs that you list, apart from pred and amitrypiline. The amitrypiline has not been prescribed as an anti depressants but as a form of pain relief. It usually starts at a max of 10mg and you build it up so your body adjusts to it. I have been on 20mg for over 15years and it does definitely help with fibro pain and other nerve based pains. Without it I don't think I would sleep at all and increased the dose to 40mg last year. It usually starts at 75mg for antidepressant purposes and can go over 200mg a day so you have been prescribed very low dose.
I hope the immefiate shock of having extra illnesses lessens soon. Best wishes🌻
Thank you for your kind comments. The Amitriptyline for me was also for pain and to help me sleep but it made me feel really low so I just take 5mgs - not sure if that’s helps or not 🤔
I am pretty much ok with the diagnosis it’s the frustration of net being able to tolerate the different medications that really frustrates me.
Yes that must be frustrating. I have taken 2 or three meds that I have had to stop or change. It's a pain when they make you feel worse than you do already.
Can I ask how your additional conditions were diagnosed? It’s just that my first Rheumatologist threw Fibromyalgia into my diagnosis even though I think I was text book PMR. My subsequent Rheumatologist has never mentioned it and neither have my GPs. I kind of doubt that it was ever there. Is it because you still experience pain when withdrawing from Prednisalone? Some of your meds seem to be ones given to help you come off steroids and they often don’t work. Amitriptylin is given to aid sleep, it’s a failed anti depressant but was found to be good for chronic pain and insomnia. I take 10 mgs because it helps me to sleep. If it made me depressed I wouldn’t touch it. I think you’d be happier on a much simpler set of meds. You need to have an in depth discussion with your doctor. If your Rheumatologist is the one making you feel like a failure, I would seek another quickly. If you tell us where you are, we may be able to recommend one.
So my pain has changed over the two years plus since diagnosis- I still have occasional temple pain and lots of neck shoulders- however I have lots of other pain also now - all joints intermittently including ribs and collar bone. My inflammation is high, my joints now swell etc. My sleep and memory are awful which could be any of the conditions and preds don’t help.
The first three med were given to help reduce steroid. The last one was to help with inflammatory arthritis to stop and damage.
This is my second consultant and she is far better than my first one but you are right I would just like simple meds I could reduce down on and not feel I was poisoning my body.
Have they told you WHY they think that? They are alll so similar in presentation how can she know it is one or all?
What of the pain goes with pred? Fibro doesn't respond at all to pred. How long were you on any of the others? Because all of them can have an effect on inflammatory arthritides though they usually take months to work - and none of them will really help get off pred for PMR/GCA. How do you feel at 10mg pred?
She decided it was fibro as well because she said the pain I was suffering was not typical PMR, plus lack of sleep, sensitivity to pain and forgetfullness etc (This I had when diagnosed and put on steroids, so no actual change with that) she agrees I have PRM and GCA. Looking at my ESR which is pretty raised next to my 'normal', she suggested I put the steroids up. My joints are tender so she has also diangnosed the seronegative arthritis.
I managed about a month on each medication, before the side efffect became to difficult - I feel far happier on the 7 mgs of steroids alone. I honestly only take the 5 mgs of amitriptyline to please her, I am not convinced that low a dose is doing anything, although If I put it up to 10mgs I certainly feel that!
I went to the doctor in 2015 because of aching in my legs, shoulders and neck and constant headache. It felt mushcular in my body. The preds took most of the pain away and I Had more energy.
2 yrs 8 mnths on, I am physically little if any better, my head is much improved (had a wee flare recently and it settled with increase in steroids, back to normal dose now) - my joints are worse and my fatigue is never ending. Although, I certainly feel better than when I was on 40mgs of preds.
I really dont want to be taking these extra medicaitons. My Rheumy said we are here to make you feel better if the Sulfasalazine doesnt agree we have lots more we can try
I would be perfectly happy on 10mg pred if that kept me well. Until she shows me evidence I have an inflammatory arthritis that is causing joint damage. Then that is another story.
But I do wish I knew where they get the idea that the pain etc of fibro is significantly different from PMR. If you are in pain you don't sleep well - there are loads of people on the forums who don't sleep well. HOW is your pain "not typical of PMR"? And what is the joint pain like?
THanks PMRpro - The consultants make me feel ungrateful that I dont want all the different medicaiton they offer.
Pain - So to be honest - most of my joints ache at times, from fingers, nuckles, toes, knees, hips, back ...... right the way up, but not all at the same time just on average 3 or four areas at any one time, then it moves to another area. (Shoulders and neck and lower back consistnet. Xrays have shown osteioarthritis in shoulders and knees. Overall, Its a combinaiton of general soreness and stiffness in some areas and direct pain in the joint on others.
My body felt the same on 10mgs but my head was better.
The report is interesting, should most consultants be aware of the findings?
Should is pie in the sky - they can't keep up with newer developments in terms of the guidelines so I wouldn't think they'd notice something this banal (in their opinion no doubt). I do know of a couple of doctors who, when shown it, stopped nagging the patient who came bearing the gift!!
All these doctors who so cheerily try everything they can think of should have to try them themselves for a few weeks. I feel bad enough so when I have found a good approach I do not wish to rock the boat. Though to be fair, a friend who has been on pred plus methotrexate for some time and who credited the mtx with helping her lower the pred, has just spent 6+ months on leflunomide and has just come off pred altogether - she says she felt the leflunomide kick in. She has had no side effects with either. I wish I could screw up the courage to try but I take a load of other stuff.
I know exactly what you mean, I can cope with how I am at the moment but I seem to have to rock the boat every couple of months with a drug I cannot cope with.
Pleased your friend is doing well, Methotrexate made me feel generally awfull and leflunomide I felt well on but it gave me diarrhoea so bad that I couldnt leave the house.
I may print that report out and take to my doc and gp ..... if I feel brave enough.
I am so sorry that you are feeling so unwell,l am not familiar with all the drugs you have mentioned,l hope that you can find a solution because the side effects are obviously making you feel a lot worse,l hope this will soon be resolved and that you will be able to feel a lot better xx
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