Saw my consultant yesterday with hope of new medication but NO. Because of my flare up 10 days ago and cortisone injection last Friday I am limited for the time being. Also my BP has started to play up so no Leflunimide ; have had retinal detachment plus a recent bleed at the back of the eye so the last of the DMARDs is ruled out until my consultant gets letter back from Ophalmologist . Because of having had a cortisone injection I cannot be considered for Biological Therapy for another 4 weeks. So I leave the room no better off than when I arrived. I could have cried. Just got take to pain relief . From the outside I look good but the inside is falling apart. What can I do ? I can't move my neck,my left shoulder refuses to work ,pain free, today, my right hand fingers are swollen and my hips hurt. Any help out there please
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Pamak
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This won't be very welcome advice....but the best thing you can do is take care of you.
Rest up as much as you can...the hell with housework or pretending you are OK.....eat what you fancy & keep well hydrated.
Just hang on in there until your consultant gets that letter & can prescribe the next .'Wonder" (Huh?) Pill. Most of all try not to stress too much....it really does make everything hurt more.
Thank you very much for your advice. I'll do my best to follow it. Can you tell me why the pain just seems to be moving from one joint to another ? I wasn't prepared for this. I wasn't expecting so much neck pain. Ah well thank you again
I'm afraid I can't....before I got settled on Biologics I could go to bed with pains in one joint & wake up with no pain there, but agony somewhere else.
I decided just to go with the flow & deal with each event as well as I could. I found the more I stressed the worse it got.
Hi Kaman I to have ra I have been of biologics of them at minute stopped working so have to detox 6 weeks before new one starts getting knee drained injections on31 Oct boo 10th Oct I to am in agony just taking pain killers
So sorry you having to cope with so much at the moment, I'm struggling at the moment after physio sessions have aggravated all my joints again so I'm lead here watching films feeling very sorry for myself 😢💋
To move It's catch 22 isn't it if u do to much ur sore if u rest ur sore I refused physio it made me worse lol hope u feel better soon good to talk to someone with ra
Hi I am new to this group and found it when researching user experience of Benepali of which I had my first injection last Thursday. I was first diagnosed with PsA 7 years ago and have done the gamut of NSAIDs, Prednisolone, Sulfasalazine, Mtx, Leflunamide, Depomedrone injections. I was initially tried on Naproxen and Sulfasalzine, after a short course of GP prescribed Diclofenac. The Naproxen replacing the Diclofenac as being less risky for long term use. Sulfasalazine was regarded as ineffective within several months and moved to MTX. The MTX dosage was radically increased as it was thought that I had an arthritic problem in my lower back. It took 3 years to get an MRI which showed it was a degenerative disc/spinal stenosis issue. Meanwhile the increased dosage of MTX showed I was intolerant to it. While I was washing out of MTX and heading for who knew where, I was given intramuscular injections of Depomedrone. This was changed to daily doses of Prednisolone tablets for the next two years, with no real improvement ahead of the initial joint improvements brought about direct injection of steroids into the joints. The Rheumies had no interest whatsoever in the progression of the associated skin plaques, and when I went for first consultation I had five areas of plaques on my body, with my knees being the worse. Today I have over 30 sites with most plaques being of at least 4cm in diameter. As stated this has been of no interest to the Rheumatologists, who have only every focussed on joint matters, and if I could pass the two finger grip test, they were happy with joint safety after ticking the box with relish.
Improvements have come from locum initiated drug migrations. After two years on Prednisolone and Naproxen I was taken off the Prednisolone and moved to Leflunamide for the last 20 months. Though I was on bi-monthly blood testing the Leflunamide was allowed to generate rather alarming liver function readings with no intervention by GP or RD. Apparently and acceptable score would be 0-42 and my reading had been over 150 for several months. Only being addressed by a new GP on change of practice. This was coincidentally the same day I saw yet another locum Rheumy consultant who immediately stopped the Leflunamide and immediately started the ball rolling to get me on Benepali. To be fair the employed RC, would provide Depomedrone injections quarterly as I seemed to be in a state of permanent flare up. As I seemed to be tolerating the Leflunamide, I was put on 6 monthly consultations and it was during the first period of this extended intermission that the blood monitoring was neglected, not helped by the original rheumy nurse leaving and delays in recruitment.
I saw the new rheumy nurse last December foe the first time, and the locum RC in April. It has taken since April 2017 to get onto the Benepali. To compensate for the complete lack of medication for the last 5 months I had an IM injection of Depomedrone to cope with my symptoms the day after the first Benepali injection.
This fact is the point of my first post to reply to the original poster my incredulity at the lack progress towards new drug treatments simply because of the recent steroid injection.
Oh my, Greymaster this is not good. What is is that the other doctor and rheumy came along and started to change things. I'm sorry about all these plaques and the fact they seem to have been ignored. Not good .. Not at all. That seems remiss. Hope you have been referred to another consultant re those. My rheumy would refer me on for the other issues if not deemed a rheumy concern.
I have fallen foul of waiting to start an infusion a few years ago. Four months I waited and I went so downhill it was a year to get back on track, but there is criteria they have to satisfy and it takes longer at some places I know. Mine was shortage of space for an actual infusion followed by staff losing test results and X-rays or not doing the right ones needed (I had to get up out of bed just after I got a call from the rheumy nurse and stagger to the hospital alone in a taxi so I could have the blood tests they messed up which were needed before I could commence!) Also staff going on holiday delayed it and then the pharmacy at hospital fouling up and losing the script request twice which they were meant to fax to the healthcare company. Oh and the healthcare company denied receiving it and then said they'd lost it. In the end my GP said .. If you're not scheduled for your treatment by next week when they promised, I'm taking you down and we are sitting there till they do it!! he phoned my rheumy and she was horrified. She said she hadn't been aware of all they was happening with the other staff and though I was alright and unaware of the delay. Hmm jury still out on that one!!
I have incredibly strong hands and could always do the grip test despite several joints showing damage, so that is infuriating to be passing that test be user you have a strong hand. .
Sounds like your first Benepali was recently so I hope you can soon feel the benefits of that. Good luck. It's hard getting there at times and when you feel awful that fight and push to do so can drain you. Well done. x
Gentle hug to you, Pamak. It is so frustrating when a week seems like a month when you want time to pass so you can move forward to a new medication. You have done all you can at the moment and things are being put in place for you. The rheumy will wait for the opthalmologist letter and then they will be deciding in the rheumy team which med to give you next. Yes, the steroid shot foxes things too as well as fixes them. Argh. You have to have a wash out period between many meds. I did between two biologics but only three weeks. Try stay calm and I know you said your BP is up and this isn't helping but extra stress worrying won't either. I hope that letter gets to the rheumy soon re your eyes. Wish I could tick the clock round for you. Time goes slow when you're wanting to feel better. Try keep as occupied as possible. I used to watch a lot of comedy/old fave DVD box sets and read gentle novels that don't require a lot of concentration. Try lose yourself in something if the pain allows. Hope you're on the mend soon. x
Stress and upset result in flares for me quite quickly so I try and keep as calm as possible. Sometime I do get rattled but it takes a lot! I hope soon you are telling us things are much better ..That pain free days are soon here.
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