Help or a hug

Am in a sorry state. Have had RA for 2 and a half years. Am on 20mg mtx, sulphasazalene was added, which did not seem to help so I was put on Enbrel in February 2014. I felt fantastic, pain and fatigue went but I had site re-actions to the injections. They were bigger each week and I did check with the HAH nurse as to when did the site reactions become unacceptable and she said it was quite common but mine were eventually spreading from my belly button to my hip. I went to see my Rheumatologist sometime towards the end of March and we were both thrilled until he saw my stomach and wanted me off Enbrel there and then I begged him to let me try for 4 more weeks as heard it could eventually stop which he reluctantly agreed to but 2 weeks later I came down with bacterial skin infection, so had to stop Enbrel anyway. Arranged to start Humira but it took 5 weeks of antibiotics to get rid of the infection so had no meds which led to 2 flares one severe in my ankle which I landed up having to crawl for a day. I started Humira in June it wasn't the miraculous drug that Enbrel was but I came to realise it was working in regards to pain in my joints. I then came down with a head cold and my nose was disgusting crusty, yellow couldn't breath was very nasal. I also got a rash on my legs and a pin prick rash on the bottom of my legs and feet and my pointer finger went completely numb one day but only for five minutes. I went to my gp and it was an appaling appt she did not look at my nose nor the rash on my legs and she said the rash at bottom of my legs was a shaving rash!!!

So head onto September I still have the sinus problems, the rash on my upper legs I recognise as pityaris roscea as have had it before and still have pin prick rash on my ankles and feet. Another GP recognises that the pin prick rash is a form of vascuallitis but not serious, agrees that the other rash is roscea and acknowledges the sinus problems. So off I trot for my appt in October with my rheumatologist. He asks how I am and I say to be honest I am not sure. I feel the humira is working but I feel so ill I have felt like this since May. Constant infections, skin problems. My consultant says I now have damage as he can feel a lot of bone. I have to have a steroid shot next week in hand as it is clunking. He says I have osteo in the end of some of my fingers too. So last week i developed itchy painful spots on my other leg and then a few days later a cold sore on my lip and it is huge and this morning my back started hurting and itching and I asked my husband to look on my back and he said I have spots but also a dry patch like psorasis. So I got an appt with a nurse because my first thought was shingles but she said no it does not look like shingles more a dermy problem.

I went to work today and asked in office if I could have a few days off as I feel so dreadful I just want to rest and I landed up in tears which is very unlike me and they know it is unlike me I have a good sickness record believe it or not.

Could I be developing psoriasis arthritis or could it be the Humira? I am just wondering because of these dry scaly patches and this sudden onset on lumpyness on the distal joints of my hands.

From a not so brave soldier hence title help or hug Jeanette

26 Replies

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  • Forgot to add My rheumatologist feels that there is something else going on as he arranged for me to have a ANCA blood test. I have not heard anything so presume it is ok. Oh and have had chesty cough for 3 weeks it is going round I did stop humira and mtx for a week.

  • so sorry you are having such a bad time you sound to be so positive too in the battle with rd hope you get some relief soon.

  • So sorry I am unable to give you any answers but sending a huge hug - I hope somebody can help you x please try and rest and regroup as I call it when I am struggling x x

  • Hi Jeanette, I'm afraid I'm not knowledgeable about any of this to be of much help but I'm certainly able to send you a hug. It sounds like you've been having a horrible time and also not a lot of consistent support. Don't you have access to a specialist nurse by phone inbetween appointments? From what you say your condition has deteriorated since you last saw your consultant and at very least you need to be seen for reassurance.

    I hope you can speak to someone and get checked out soon. Hug is on its way x

  • I don't have enough experience under my belt to help with this one so A BIG HUG it is.

    Ali

  • Hi net2012,

    sorry to hear that you are having such a rough time of it. Hope you feel better soon. I have put a link to the patient information leaflet on Humira for you to look at. There certainly are a lot of possible side effects:

    medicines.org.uk/emc/PIL.17...

    As always though, if you are concerned about anything then contact your rheumatology team. As paulywoo mentioned, do you have access to a nurse specialist via a helpline? It may be worth giving them a call. Hope this helps and best wishes,

    Beverley (NRAS Helpline)

  • Sounds like you are having a rough time, your time frames of disease are roughly the same as mine and I too am having it rough, I was on Enbril and it was amazing I lasted 10 weeks was out running, cycling, hiking the lot, I felt like a new man, it was outstanding. Week 5 I started getting site reactions, that just got bigger and bigger, but I was managing them with antihistamine tabs and steroid cream, I then started getting pins and needles in the heel of both hands, at week 9 I was told to stop to see if the pins and needles cleared up which they did, I was then put back on it and about 2 hours after injecting my whole bottom half broke out in rashes, one of them stretched from just under my bum cheek to half way down my calf, and the rest of my legs were covered in welts, mainly around the knee joints and ankles, but also sporadically on my thighs and shins, and one appeared on my left forearm, I was immediately taken off Enbril for good, and had to wait around 10 weeks to start on Cimzia, which I started 3 weeks ago, nothing as yet unfortunately, and I am flaring like mad, currently on Morphine for pain relief, but that is not doing much either. Since I have been diagnosed I have been struggling with my skin on my face, from never having any skin problems I have been getting treated for acne and also Rosacia, I feel Rheumatoid just runs riot in our bodies and anything the immune system wants to attack it will. I am also off my Methotrexate due to high LFT, something which I never suffered from until I came off Enbril, and have had a liver scan to check for damage. I hope this helps that I have had some similar problems to yourself, and you know you are not alone, I have faith that I will find the right combination of drugs soon, well I live in hope, hope you get well soon and Humira works for you, coincidently one of my friends has Psoriatic Arthritis and is also on Humira, which he said took around 12 weeks to start working, he now works 02 hour days with very little problems, hope this helps :) x

  • Sorry 12 hrs a day

  • Oh Iain I am so sorry to hear of all your problems. I have rheumy nurse line today and asked if I can get to see a nurse before my appt with rheumy I think having a skin scrape and it to be analysed would be a good idea for both of us. Hope things pick up for us both soon.

  • Its horrible no doubt, hope you get yourself sorted x

  • So sorry Iain .. sounds familiar .. as I talked about before with you, enbrel lasted only 5 weeks for me and gave me the hope it would do much more as it worked from day one! I was a different person too. I hope you soon get some improvement from your new med. Hugs. NK x

  • Not nice having hope and it being swiped away from you, you think your done with it and then it bites back..horrible x

  • Yes, but keep the faith and there WILL be a med which WILL work for you ... it is difficult for the rheumy's/docs to know which one will suit. They try and give what they hope will. then all thus being bedbound and housebound drives you insane I know. Brings you down and makes you feel rotten. It WILL get better, I know it will. Hold that thought Iain. x

  • Thanks NK I know I will have to, as I'm going off my head at present, could scream to be honest!, thanks for the supportive words , think we could all do with a hug at one point or another :) x

  • I just hope that you start to feel improvement soon. I know you feel like you never will when you are in such a bad place with the pain and confusion but it will happen. I uncharaceristically lost the plot big time when nothing was working earlier this year and last year. I ended up having several double sessions at my GP as I was in such a bad way with the pain and anxiety. Not his job to do counselling but he helped me pick my way through things and support me. xx

  • I can't win, had my liver scan results today when I went for joint injections, and they are showing my liver has changed texture and there are some shadows :(, have to go to oncology now to get further more detailed tests..really wasn't expecting this on top of everything else :( x

  • oh no ... so sorry. Hope you can get these tests soon and progress with improving your RA. xx

  • I'm so sorry that you are having such a rough time. I started Humira 2 months ago and it's working brilliantly for me. But all of the blurb that comes with the injection and also online says that it can actually cause you to develop psoriasis. I had pityriasis rosea years ago at the age of 18- it wasn't very pleasant. I do hope that you can get sorted soon and that you don't have psoriasis. Good luck. Clemmie

  • A big hug that is what i can do

  • I'm so sorry you're going through all this rubbish but maybe it would be an idea to have whoever gives you your steroid injection take a look at your back. A Practice Nurse wouldn't necessarily have connected a possible RD symptom as Rheumy nurse would. ((()))

  • Thank you everyone that certainly lifted my spirits today. First time I have ever asked for time off work. Previously I have only had time off due to being unable to walk or having such a terrible flare in hands. I knew I had to make this decision I am exhausted physically and emotionally.

    I think I am just so confused with what is going on or having to juggle with a drug that helps my RA but also gives me infections etc.

    I also think I am flaring as well, you just forget that you can flare even on these drugs and it has been many months since I have gone through the fatigue part of flaring that I forgot what it is like.

    Am going to be proactive in my treatment and start a few days of Ibuprofen and of course I have the next week of just having rest.

    I have just actually rang my rheumy nurse line thanks to all of you mentioning that and asked if I can see a nurse before I actually have my appt with my rheumatologist who is giving me my steroid shot just in case he does not have the time to look at these rashes.

    Thank you all for all your replies and hugs it really does help. Jeanette X

  • So sorry Net 2012 .. very, very similar experiences to you and Iain on Enbrel last year. Tried Humira also and it did not improve my RA. In that time of taking those and waiting to see results .. my joints got quickly damaged from not being properly protected .. fresh joint damage to my fingers. Now on Rituximab. I hope things can soon settle for you as all the other things to contend with too are not easy. NK x

  • So sorry to hear that things are so bad for you. I failed rituximab, secondcourse allergic reaction Enbrel seemed to be working, butrapidly worsening injection site reactions. Now on humira, about 4 mths, had to stop when had an infecrion, since thatmore problems with sinuses, beginning to wonder. ....is ot helping, RD, s it causing the other problems.

    So, I really feel for you, and hope that everythinh settles soon

    M x

  • M same here blooming sinus probs. I am sure it is helping the RD I knew from going to bed at night I was actually falling asleep rather than trying to get to sleep because joints were throbbing x

  • Thank you all . My rheumy nurse said my consultant will have time to look at the rash but she would like me to go to gp anyway so have appt next wednesday. Am just having lots of sleep at moment lol. I agree Enbrel was a really wow drug, heartbreaking when you have to come off. Humira is good is works very quietly in the background. I have a steroid shot in hand next friday so hoping a bit of it will ooze into my system and give me a bit of a buck up. Many thanks for all the hugs an words of advice x

  • Back again. Even though I have been having rest I felt worse as the week went on so managed to get gp appt yesterday evening. I have sinusitis and the rash is pityriasis, so antibiotics and some cream for the rash plus 2 weeks signed off work!! I have never had that amount of time off work sick since I had my appendix out in 1983. GP has seen me since May and knows how much problems I have had since then, also have a huge cold sore. So I am going to really get some rest the next 2 weeks. I have steroid shot next Friday but will finish my antibiotics by Thursday evening. Rang Nurse and she said yes will be ok to have shot. Iain sorry to hear you now have more problems, fingers crossed all goes well for you x

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