Enbrel

Sarahd1609

Hi. I'm on Enbrel, methotrexate, leflunomide, tramadol, gabapentin and ibuprofen, with paracetamol thrown in for good measure. I find my joints feel like they are burning at night especially and I feel war. Although not fever warm, does anybody else get these side effects? X

stickywicket

I don't take enbrel, just meth and hydroxy, buy it does sound as if your arthritis is not under control right now despite the triple therapy. Why not ring your rheumatology helpline? They'll have access to your latest bloods.

dreamdaisy

I run hot all the time which is probably due to my fibro. Enbrel tried to explode my liver but I know it works well for some, which is a good thing. I don't take gab, tramadol, lef, paracetamol or ibuprophen, I'm on injected meth, humira and tablet sulph, and my pain duller of choice is cocodamol 30/500. It seems that you are on a fairly weighty cocktail of meds so I wonder if they are working against each other? When are you next due to see your rheumatologist? DD

Sarahd1609

I started on sulfasalazine but had a Very nasty reaction. Was put on meth tablets, then moved to injections. I was then put on leflunomide and hydroxychloroquine but when that triple whammy didn't work they decided to take me down biologic route. They took me off hydroxychloroquine introduced Enbrel and after a blip in my bloods reintroduced leflunomide and methotrexate. I've rung rheumatology helpline and am waiting for a call as am not due to see rheumy until August. I just feel it is a never ending battle to find something that works and right now I reckon I've got more chance of finding a pot of gold at the end of a rainbow than controlling this xx

dreamdaisy

I remember this so clearly. My hospital is now very proud of the fact that if, after six months, meth in either form isn't helping then biologics here we go! In my early days it was trial-and-error with vatious meds in varying combinations for years so by the time I started biologics they couldn't achieve what was promised because I was too far gone. I remember when I started humira my consultant telling me that I would lose the sticks and not have to take pain relief any more. Yeah, right.

For some the meds work and work well but for others they are blunt instruments which don't sharpen much in their combinations. I hope you can find the right combination for you and soon - have you been checked for fibro? If not it may be worth raising that at your next appointment. I understand the misery of overheating, I do it during the day as well as at night; when the weather is as it is now the electric fan is going at all times, I carry a hand fan in my handbag together with a flannel for emergency mop-downs when out and about. It isn't fun. DD

stickywicket

I think it's a matter of re-defining 'works'. We will always continue to lose bits of our lives. Everyone does as they get older but, with arthritis, the bits drop off sooner and with monotonous regularity. My definition of a drug 'working' has changed over the years.

The pain meds are just tinkering at the edges but are all the GP can offer so I think it was a good move to ring rheumatology and I do hope they can help.

Sarahd1609

Thanks everyone. I'd love to say rheumatology helped but I had a call from them earlier and all they could say to all my symptoms was "oh dear". When I explained that the GP had yet again put me in tramadol, I was told to stop taking that immediately as it does me no good and that with my mix of conditions, I may just have to learn to live with some pain. I told her I would do a controlled stopping as Enbrel with an overnight stop on tramadol leaves me really unsteady to which I was told well it's because I'm addicted. It took me practically begging for her to even say she would try and push my rheumatology appt forward as I told her i really am at the end of my tether and the pain is unbearable. She told me I should be moving more, but when I said that's al. Well and good but I feel like my hips are going to pop out even though I know they can't I was told well I know they won't so that was a stupid comment.

I'm just praying I can get an apt sooner as I'm struggling to do the basics each day now and it's mentally draining me xx

stickywicket

You are right. It's mentally draining and physically draining and that makes us less able to function all round.

Medics do have a problem in that it's hard for them to diagnose and prescribe over the phone unless it's something fairly obvious. Equally, your GP is not qualified to tinker with the rheumatology meds. He can only give you pain relief and, as DD pointed out earlier, you are on quite a lot of that so I can understand rheumatology being unhappy about it. The aim is to get your arthritis under more control so that you need less pain relief. We all have to live with pain. The tramadol, gabapentin etc etc only dull it. They won't remove it.

What 'mix of conditions' do you have? I apologise if you've told us and I've forgotten.

It's true we all need to keep moving. Physios have always told me to exercise daily but to keep it very gentle, slow and steady when flaring. Exercise is, of course, the last thing we feel like doing when stuff's really bad but, paradoxically, it does help. You will not damage your hips by exercising them. In fact, you'll strengthen the muscles so that they support your hips better and that can result in less pain not more. I exercised my hip right up to the day I had it replaced and that made my recovery quicker.

Have you tried following Arthritis Care's free, online Pathway through Arthritis course? It gives all sorts of help and useful tips on dealing with the disease and the pain. I think you might find it helpful. https://www.pathwaythrougharthritis.com/

dreamdaisy

The medics deal with the theory whilst we're lumbered with the crunchingly painful reality. Layering the pain relief won't provide any more relief and it always comes back, but pain is frightening which is why it's so tempting to keep adding in more meds. I no longer remember being pain-free, every move I make hurts something somewhere but that is how it is. I have had to make adjustments in how I live and what I do to accommodate it, that is my reality.

In my thirteen years of going to rheumatology I've learned that they mostly say 'Oh dear,' in fact I heard that myself this morning at my appointment. The help they can give is finite and would not necessarily be defined as help by those who are used to going to the docs, taking some pills and getting properly better. We go to the docs, we take our pills and do our injections but 'better' is not necessarily part of the picture. For some it is, their symptoms are beautifully quashed allowing near-normal life to resume which must be lovely. I've re-defined better as applies to me, it means marginally less bad.

It takes time to find what combination works the best for us, we are all so varied in our responses to the meds and our tolerance to pain, and we have to do as much as we can to help ourselves. Diet and exercise are important but limited in what they can achieve. I hope you are able to get an appointment soon but I'm not sure what else can be done. That's for your rheumatologist to decide. DD

Sarahd1609

Thank you everyone. I'm feeling a bit better today after finding out that the new pain is sciatica and can be dealt with by upping my gabapentin. As I said to the gp who saw me today I am a complex case as I have psoriatic arthritis, ankylosing spondylitis, tenosynovitis, early onset osteoporosis, hypermobility and now sciatica. I have had some relief from the Enbrel as my knees are not as bad in the day and only swell and burn at night which I can live with. I think the other day I was just upset as my back was causing me a lot of pain and rheumatology couldn't help. However, another day and another fight but I'll get there. I am a human pin cushion between weekly blood tests, enbrel injections and methotrexate. My 6 year old asked would I rattle if he shook me as I take leflunomide, folic acid, gabapentin, ibuprofen paracetamol and tramadol which I am trying to cut down. I think I've just hit rock bottom at moment and need to find the energy to climb back up xx

stickywicket

I'm pleased the current crisis has been identified and dealt with. Will you tell rheumatology you no longer need the early appointment or do you think it's best to try to sort things out between them and your GP asap? It sounds as if they are unhappy with the way your GP is dealing with the pain issues. This is not a good situation as it's better for us if all our medical professionals work together. Hopefully, by increasing the gabapentin, you'll no longer need the tramadol. That might be something positive to tell them when next you go.

Sarahd1609

I was already coming off the tramadol as I know it is addictive, but I also have to be careful how I come off it, as with the Enbrel, to go cold turkey would set me back. I'm going to go to the closer rheumatology appt if they can offer me one as I do feel they need to know Enbrel is having a positive effect but also that my back is really troubling me now. I think because my knees feel better I am noticing my back more, but if I can just control that pain better it would be helpful. Thank you got your help and support. I really appreciate having people there who understand me and give me the help and motivation I need to keep going. I don't know what you do for a living, but you should look at bring a counsellor as the support you give is so appreciated and valued xx

dreamdaisy

It is annoying how other conditions occur despite us already dealing with arthritis. Sciatica is not something that comes under rheumatology's remit so they won't be that interested; my late Ma had it very badly but was eventually sorted with a mixture of physio and hydrotherapy. I suppose the positive news is that it can get better, so that is a good thing, but in the short term it's yet another thing to disturb your life. I hope things improve for you soon. DD

Sarahd1609

Hi Dreamdaisy,

Thank you for being so understanding. I really hope the sciatica is short term, as it is really aggravating the spondylitis at the moment. Hopefully a few weeks on the increased gabapentin will help both areas. I really appreciate all the help I get on this site. I've spoken to do many other people but they don't really have a clue what this is like, so it's nice (under the most horrible of conditions) to be able to relate to others. Thank you and I hope you are ok
Sarah xxx

stickywicket

Thank you for the very kind compliment, Sarah. I think we all just share our knowledge and experiences on here as we all know the misery of arthritis and those who don't have it can't.

I'm glad you feel the enbrel is doing some good. Little differences can make big differences in the not-so-wonderful world of arthritis. We are never going to be cured and we're never going to experience 'pain free' but, with an effort and within our limits, we can actually do quite a lot and can certainly enjoy life.

I've only ever had sciatica near the end of my second pregnancy when No2 son decided my sciatic nerve was a comfy place to sit. It wasn't much fun and thankfully went when he came. A golfing friend of MR SW was a non-golfing friend for some months due to sciatica but a good exercise programme got him back to playing.

Have you ever tried a Pain Clinic? They give techniques for dealing with chronic pain, probably very similar to those contained in the Pathway Through Arthritis which I mentioned. Your GP could refer you.

Sarahd1609

Thanks SW. Can my gp or rheumatology refer me to a pain clinic? I'd love to learn new ways to manage my pain, preferably without meds. At the moment I have come off the tramadol, but have had to increase gabapentin to cope with sciatica? I'm feeling more positive now even though pain is really bad and am setting myself daily tasks, even as simple as putting asking on the line etc. xx

stickywicket

Oh well done you! That's the way to go If we set ourselves small tasks we get a well-justified sense of achievement on completing them. Mind you, hanging the washing on the line, and getting it in again, can be quite a big task in cold, windy weather. It does often blow the creases out though and saves on ironing

I think both GP and rheumatology could refer you to a Pain Clinic. Probably they offer much the same techniques as those in the Pathway Through Arthritis course I mentioned but with the advantage that they can change your medication if needed. Also some people prefer to be in company while doing these things and others prefer the comfort of their own homes. Good luck with whichever you choose