Flare up advise

Really don't know what to do...I'm not currently on any RD meds only Prednisolone. Due to side effects I can't take DMARDs, Enbrel put me in A&E and Humira caused high BP, palpitations and I felt really unwell for a week after injecting. I've been on Prednisolone for 3 years and desperately trying to wean off. I got down to 6mg when trying to persevere with Humira as It did keep RD at bay. 

I took my last Humira injection on the 10th December. My Rheumatologist left our ever disintegrating hospital in January and I was told that appointments for his replacement would be around August as the new Rheumatologist worked out of another hospital in a different town and the patients at our hospital would be seen as a backlog. I decided to go private as I was worried that I'd start to flare once Humira was out of my system. 

The only rheumatologist I could see privately works out of another town. My consultation was private but he could only treat me in his NHS clinics. At my initial consultation the Humira was still in my system so I had very little swelling. He sent me for scans on hands and feet which came back positive for feet, negative for hands. At my review appointment he told me he thought the pains I was getting was fibromyalgia and he didn't think I had RD. I could have cried when he said the waiting list to see him, as a new NHS patient, in his clinic was 3 months. He said he'd write to my GP to give me some painkillers as I can only take paracetamol due to GERD. My GP gave me Tramadol but I'm reluctant to take them after reading they can be addictive. 

Three weeks after my review I guess Humira was finally out of my system as the pain and swellings came creeping bag in my hands and feet and I'm now in a full blown flare. My GP recommended the rheumatologist see what was happening so I contacted his secretary and she made another private appointment. He told me it looked quite aggressive (nodules already forming on my knuckles) and he would contact the specialist nurse to get me started on a new biologic, in the meantime increase prednisolone to 15mg until I see her. I contacted his secretary after a week went by and she told me she'd been off and hadn't seen his notes yet. When she tried to get me an appointment with the Nurse it's going to be 8 weeks. 

You all know the pain I'm in right now. I can barely move my hands and my toes feel like they're going to burst. Do I increase Prednisolone again or take the Tramadol? Can anyone advise me on the lesser of these two evils please? I know it's only short term until I get new RD meds in my system (fingers crossed they work) 

20 Replies

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  • Hi there I'm not giving you medical advice but I take tramadol for pain and it works for me but might be different for you , plus the only steroids I take are injections now and again give one of the Nras people a call and they might be able  give you better advice take care xxx

  • Thank you, I'll try ringing them.

  • What a difficult position you're in. As you probably know we're unable to give medical advice but we are able to offer support. That said you have been advised by the Rheumy you saw to increase your pred. I know it's a shame after managing to reduce it to 6mg but these are extenuating circumstances & you really need to bring your inflammation down. The tramadol should reduce your pain but I understand your reasons for avoiding taking it so far, it's not a med I'd prefer to take long term, in fact I've talked about this with my GP when we were starting my OA pain relief & she understood my concerns. But, we don't know the dose you were prescribed or your tolerance of it & even though it's been prescribed as a short term med you should have been made aware you may still have to taper it. Generally in meds such as these the longer you take them the greater the chance of withdrawal symptoms & why tailored tapers are best suggested by the prescriber when coming off them.

    The choice is yours really. I understand your predicament but if you were to ask me outright I would opt for the steroid, I can relate to your disappointment, the thought of increasing it again after getting down to 6mg but it's not effective at that dose with nothing else in your system just now. I'm really wanting my Rheumy to stop relying on my maintenance dose steroid controlling me, hence my understanding. I'd prefer to treat the inflammation, tramadol will relieve the pain but it's not pain that causes damage & it's the inflammation that causes the pain. The other thing to consider is that the tramadol was prescribed after he saw you at the first appointment, when you had less inflammation. When he saw you the second time, when he asked the nurse to start the new biologic he said to increase the pred until you see her again. 

    I hope that makes sense! Just my thoughts & I'd keep reminding yourself whichever you plump for it's a sticking plaster, a means to an end to fill the time in less pain whilst waiting to see the nurse again & start your new treatment. x

  • Sounds like a painful situation 😞 Thought I'd let you know that Tramadol out of most pain pills is about the safest. Im highly allergic to everything, steriods, plaquenil,gabapentin etc.   Even aspirin, ibuprofen, otcs.... I do take a 50mg Tramadol, break in qtrs just for some relief. It isnt an Opoid. Also Ativan 1mg, taking a qtr helps my burning & muscle pain, helps anxiety & helps reduce BP.

    Good Luck....I really suffer more each day or especially with weatherchanges. Marti 

  • Sorry to disagree Marti but tramadol is an opioid, albeit a man made synthetic one. Here in the UK it's a Class C Schedule 3 controlled drug.

    patient.info/medicine/trama... 

    "tramadol is considered an opioid medication because it like morphine and hydrocodone bind to and activate the mu opioid receptor"

    healthcentral.com/chronic-p...

  • I read that it was an opoid after I got my prescription. The pharmacist asked me for ID with it being a controlled drug. This is the main reason I'm reluctant to try it, plus I'm also intolerant to morphine. I was given it after an operation years ago and it made my BP plummet. Apparently it was touch and go but all I can remember was going in and coming out of consciousness and feeling extremely cold. Thank you so much for replying and the information.

  • Hi, I can't answer your question, I did however have the same reaction as you to morphine after an operation. Scary isn't it, I was advised never to take it again. 

    Love Bernise Mountain Dogs & have had two. 

  • That must have been frightening. Is your GP aware of your reaction to morphine, the one who prescribed tramadol? It might be worth mentioning it so it can be added as an alert just in case morphine based meds are ever considered, it's not always obvious from a med name. I hope you feel somewhat better today?

  • Not giving medical advice but If I was between Biologics and flaring and in extreme pain ( as only we sufferers can know HOW extreme) I am talking about what I would do and plan to do if I flare again is to get the inflammation under control as quickly as possible and to do this would be a decent dose of Prednisalone and strong painkillers. 

    I've just been prescribed Tramado for just this occurrence. Better no pain and zapped inflammation albeit by using steroids than wild uncontrolled rheumatoid pain and inflammation that alone is going to send anyone's BP soaring.

    Once the decent dose of Predict has worked its magic and the pain is less then doses can be lowered.

    Everything about this disease is all down to finding balance and control.

    Sending you all best wishes and support for some decent relief.

    Mx

  • Apologies for damned predictive text and weird disappearing letters from the end of words :(

  • Ask to be referred to a pain management clinic and they could well get you started on amitriptyline

  • I take Tramadol and haven't found I'm addicted to them I only take them morning and night  , I think if your responsible and only take when needed your be fine  you really need to take something pain is evil  

  • Recently I had another flare after tapering down the steroids after the previous one. I put off increasing the steroids for some time not wanting to increase them after all that hard work. When I did give in the flare rapidly disappeared and I felt I had been stupidly stubborn. Still a struggle to reduce again, though. It's a matter of balancing risks all the time isn't it?

  • Hi Bernese,

    I understand the worry about addiction, because I became addicted to Oxycontin after I had my first knee replacement surgery.  I couldn't quit the Oxy, and  so I ended up on Methadone to stabilise myself.  Now I'm weaning myself off Methadone.  I know how scary addiction is, and with every fibre of my being, I want to warn you off taking any drug that may be addictive.  Something I have found, is that while a drug like Oxycontin is highly addictive, most people can wean themselves off it very easily after their surgery (a lot of people are prescribed it for post surgery pain relief, and others are prescribed it for ongoing and strong pain, which is a whole different ball game by the way).  However, there are some people, like myself, who find that they cannot get off the stuff, no matter what they do.  Many of these people go on to take Methadone, which of course, is just getting addicted to another drug.  Being addicted to Oxycontin was hellish, and moving onto Methadone was such a huge relief.   And now, finally, I can wean myself off Methadone.  Anyway, sorry to ramble ... In my humble opinion, any drug has to better than taking steroids like Prednisolone etc (which I currently take).  I'm not knowledgeable about Tramadol at all, but I know that it's considered a weak opiate.  Amongst all the opioids available, I tend to think that Tramadol is the safest.  If you want to put your mind at rest, in terms of analysing the pros and cons of taking Tramadol, maybe you could give it a trial run for a week or two, and then start reducing it.  This way, you will find out how easy or hard it is for you to wean yourself off the drug. I know this isn't the most intelligent idea anyone ever had, because obviously you don't need a drug that you are having to start and stop taking all the time.  But maybe Tramadol could be your go-to drug when you are in too much pain to bear.  If you end up taking it for longer periods, I don't see it as a catastrophe for you, because I think you could wean yourself off it without too much trouble.  Otherwise, have you heard of a drug called Targin ?  I live in Australia, but I don't know which part of the world you live in.  I imagine that there must be a similar drug, no matter where you live.  Targin is an opiate very similar to Endone or Oxycontin, except that it also contains Naloxone, which is a drug that prevents one becoming addicted.  If only It had of been available when I was having my operation. But now, maybe it could be an option for you.  I hope you find something that works for you.  Autoimmune disease is a hellish experience, and lots of times I feel that I'm damned if do, and damned if I don't.  You are left trying to figure out what's worse... the disease or the drugs.  Life is short.  Just do what you gotta do, and be happy... if possible.  Best wishes to you.... (if you have any questions about Targin, you can contact me at @[])

  • I feel so sorry for you.  It is awful to be in such pain.  I honestly don't know what to suggest except to keep ringing and trying to get a cancellation. I wish you all the very best.

  • Hi, being in so much pain is awful. I was against taking Tramadol but it helps me, doesn't take the pain away completely but I only take a small dose. All I really wanted to say is make sure you eat before taking them, they can make you feel weird when you first take them. That wears off over time but I must reiterate its better to take them after food never on an empty stomach. Good luck xx

  • Thank you all for your replies and well wishes. I saw GP today and she told me to increase prednisolone but no higher than 20mg. She gave me Alendronic acid for osteoporosis, has anyone taken this? I'm hoping it doesn't set my GERD off as there are specific instructions when taking it and she said if I don't do it right I will get reflux. I'm feeling a bit better in myself today (slept most of the last 2 days) swellings still there but pain has eased a little...or maybe I've adjusted to it, I think we all tend to do that...learnt to cope, keep a stiff upper lip and just crack on.

    Thank you all again, it's lovely to know we've got each other to talk to 😊

  • Well I know how you'll be feeling but you did need to do something, I hope it's doing the job.

    I'm borderline for osteoporosis, osteopenia, & as I'm on maintenance dose steroids I have a DEXA scan biennial. Alendronic acid was the first bisphosphonate I tried so I changed to risedronic acid but I had the same side effect from both so I've not taken anything except AdCal-D3 for a year. As long as you take it with plenty of water & then keep upright for an hour (I was told 2 hours but I think that was excessive) you should be ok. Both gave me really bad headaches which by about lunchtime turned into migraine so I was spending most of Saturday in bed (or in the loo) so my GP agreed it wasn't for me. I was told by a locum last July depending on the results of my latest DEXA scan done in August I may qualify for infusions but there was some doubt with the result & as yet nobody will sign it off (my Rheumy's on extended leave). I see a Rheumy next month so will discuss it then. I think as long as you follow the instructions you should be ok but if you do have trouble, reflux particularly, do report it to your GP. Sorry I can't give a more positive experience. x

  • Update: Cimzia being delivered next week. I've had to reduce steroids down to 18mg because they're affecting my eyes. My vision keeps going blurry and they are really sore. GP checked for diabetes and pressure yesterday and thankfully both negative 😊 I know it will take time but I'm  praying Cimzia works 🙏🏻

  • I hope so for you too, something's got to so let's hope it's Cimzia. x

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