Hi all, its been unusually quiet here. I’m thinking that it would be good for everyone willing to do a brief update. What is working? What is changing? Your main concern and greatest hope? Any words of encouragement in this season that is typically known to be especially “glum”?
Thanks for asking! The injection in my left wrist worked great for my carpal tunnel - even significantly reduced the carpal tunnel in my right hand!
Since then, I’ve had some serious respiratory thing that is not Covid, so postponed the right wrist. But with a treatment of 50mg of prednisone per day for 3 days, who needs an injection? I even had a clear face between the two steroid doses.
Unfortunately, the oral steroids stopped yesterday, and there is some numbness creeping back into my hands. My face is again breaking out, and a planned surgery consult (just the consult to talk about surgery for Crohn’s) was delayed by two months because of this other virus.
My daughter has been home sick too (and in isolation all week), and so had to have a Covid test (and one for this other virus) before being allowed back to school. That precipitated a panic attack. A few days later, she bravely showed up for it without me forcing her. Still waiting on results for the other test (no Covid - for that we are very lucky in our area).
So all in all, I’ve had better fortnight’s!
But on the plus, my toilets and taps finally work properly, and I’ve had a dishwasher installed 
. And though it feels like death by a thousand cuts at the moment, it will get better.
Lockdown continues in Italy, as elsewhere. We are waiting for national vaccine campaign to ramp up, and instructions for rheumatic patients apparently include summons from hospitals for booking, at least according to today’s news.
My general health, or rather symptoms, at the mo about 85 per cent function.Must do check ups, am still on methotrexate and cosentyx, plus vit d, boron, vit k2, folic acid, risedronate sodium, and carnivore diet.
I work lying down in bed so as not to stress the spine, will do a scan at some point, but combination of this posture and bmi control as well as rest seem beneficial . Had another instance of severe back pain a while back but recuperated function and decreased pain in only a day or two, so thankful.
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Hello, I started Remicade infusions a few months ago. Sometimes I feel like they are working and other times not so much. My hands and feet are at a new normal of swelling but tolerable pain. I have had to go on prednisone a few times to calm down flares. I’m still able to keep working though so I think Im ok for now. Hope everyone else is doing “well”!
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“Well” is a relative term isn’t it? Sometimes “well” is a lot better than it was or better than it could be or just an acceptance of this is good as it gets and I’m ok with it. I wonder if there is a point in which PsA isn’t thought about for a few days? I think about it every time my feet hit the floor or I have to get on floor or kneel down. Not much happening yet from the Rinvoq but it’s only been 3 weeks.
I’m doing fine on 300mg of Cosentyx, the best fine I’ve had for at least 3 years. On it now 16 months. Yes I’m a bit stiff sometimes, no I’m not tired anymore. No to any significant pain anywhere else too. However I still can’t kneel down but whilst I haven’t fallen down recently, I’m guessing I’ll have a better chance getting up again now. I’ve given up wanting to kneel down anyway! 
Having issues with walking boots since my feet behave like ‘the princess and the pea and the matresses’ and my old comfy boots sprung a leak and aren’t available anymore. So my house is presently getting full of boot deliveries which need returning since the UK is still locked down so I can’t go to shops. It’s somewhat tedious really. However the UK’s vaccination roll out is going well (it’s the only thing the UK has done well) I’ve had the first Covid vaccination dose and eagerly awaiting my second. So I do think things lock down wise will improve rather well finally.
However I never thought a PsA med would work for me and this far this one has which is frankly amazing. I feel very, very lucky.
Osteoporosis wise (thank you pred for that gift) is also improving. The dog dropped a heavy large raw marrow bone on my ankle the other day and merely bruised it. Prior to that he might have fractured it. And no other spontaneous fractures either not since the MRI machine cracked a rib last June. So phew on all that.
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That’s fabulous that your bones seems to have stabilized enough that it’s not a constant worry for you that you might break a bone.
Honestly, I’ve been back on Prednisone these last few months and it definitely is concerning. My fractures were never shown to be from osteoporosis as my bone density was quite good. but I broke three bones in my feet in a short period of time with no trauma so is definitely still an ongoing concern. I’ll need another year or two to really feel comfortable.
@Stoney I can see why prednisone makes you nervous! Is the Steroid injection effective but less harmful?
That’s an interesting question. I don’t think that it’s less harmful, unless you mean an injection directly into a joint.
Although clearly some amount of the steroids makes its way into your system even with a joints injection. My mother is diabetic and when she gets a joint injection, she needs to adjust her insulin because her sugar levels will be higher
The reason I ask is that my rheumy has a prescription waiting for me for a steroid injection usually given in the arse to help the whole body. He said that he wouldn’t put on prednisone anymore and that the injection should tame things down as a bridge. He commented that it is easier on the body and could last 3-6 weeks without the causing the typical prednisone concerns…but it still is a steroid to be respected. When I have had spinal steroid jab or knee injection, I felt better all over.
Interesting. And mine doesn’t do them. I feel like it’s an individual preference on the part of the rheumy.
Yes my bone densisy scan don’t show I need osteoporous meds either but the weird spontaneous fractures warranted being medicated and I was finally glad to do so. Been on them just short of a year now and I certain feel more confident. I’m fairly clumsy sometimes and this far (touching wood) nothing stupid has happened despite bumping into things or the dog dropping his bone etc. All that has certainly made me more confident.
THe steroid bum shot is still ‘steroids’ so is as harmful as the steroid tablets from a leaching calcium from your bones sort of way. Here they will only allow a max of 3 shots in the bum per year and for some rheumys that’s too much too. However those shots never worked for me. The tablets did though. I would hazard a guess and say the tablets are better at leaching calcium from your bones though. The injection is less acute on the rest of your body for certain. And that’s probably why it didn’t do anything for me.
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I was with my rheumy for four years but she left to move to new york. My new one is terrible. She doesn’t even examine me. She took some xrays and said I have OA in my lower back but that’s it. I don’t know what her deal is but I haven’t forgotten the last 5 years of suffering and and the trials of meds. I’ve been on Stelara for about 3 1/2 years and my blood work is normal at last. Every single one of my joints hurt except very middle back. I went to a pain clinic for about a year and got millions of injections. Then went to a neurologist and continued the occipital nerve blocker and injections into my wrists, the underside, for carpel tunnel. I have enough problms grasping things due to fingers being basically useless from the PsA but with the injections i was dropping and crushing everything. I couldn’t feel hands for long time. Eventually the occipital injections began causing worse headaches for about 5 days after so I stopped both. I am experiencing extreme fatigue probably because I cannot sleep at night. I have bursitis in hips, really bad even after 4 months of PT. If I lay on either side it crushes my hip and shoulder. If i lay on back, it breaks my back. I have an adjustable bed which helps some but not enough. So for past 2 and half years I haven’t gotten any quality sleep. So even though my blood looks normal (the new rheumy didn’t even request my old records) I can tell you that my joints are still very much affected. Progressive and incurable my first rheumy told me. i lost 100 lbs all on my own but since covid hit, i gained back 50 so that has added to the inflammation I am sure. The extra weight is hard on lower joints too. But now I am in too much pain to do much of anything. I need constant bed rest throughout the day. And, I just got divorced and am living alone having to do things that are very hard for me like carry groceries and take out trash. So things are not great and I am looking for new rheumy who will take me seriously.
I feel for you. That sounds like an awfully long time to be having so many functional limitations, as well as being in pain. From your description, it doesn’t sound like the Stelara is working as well on symptoms as I would hope if it were me - was there another reason you are still on it after 3.5 years?
I’m glad you’re looking for a new rheumy. When somebody has that much joint involvement, it is ridiculous to think that it’s a problem with the individual joints. A full body flare requires a systemic treatment that actually works. I hope you’re able to find a new rheumatologist with minimal fuss.
and while I’m sorry to hear that you are having to deal with all of this on your own, I hope that the divorce was overall a positive for you.
Stelara is my 7th medicine (3rd biologic) and the first one that I could tolerate and had any effect. My old rheumy told me there is only Cosentyx after this and she wanted to save it in case the stelara failed. She said there are others but she is using ones that work on my psoriasis too… She told me that because I was so sick and in so much pain for so long that my nervous system has gone insane. I have developed fibromyalgia. My neurologist tried me on two meds for it, but they both were horrible. I’ve only seen the new rheumy twice and I don’t trust her. I finally got an appointment on march 25th with a new one. I am hoping she will have some ideas.
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The primary cause for the divorce was the PsA. He couldn’t tolerate watching me suffer. This led to other problems and I am glad it is over now. But with my condition and being 43 years old, I am seriously doubting I will ever meet anyone who will accept me.
Seriously? He couldn’t stand watching you suffer? What?!?
Assuming that you can bring things into better control, you’ll be in a better spot. And if my friend with 43 cats can find a new boyfriend in her mid forties, I’m sure you can when you’re ready.
lol
43? omg