A little positivity ...

[LemonZest11]

Hello Everyone,

I thought I’d share my recent experience of having a needle injected into my shoulder joint. It’s been an ongoing sage with my Rheumatologist convinced it was bursitis and giving me two cortisone needles into the bursa on two occasions, each only working for 2 blissful weeks. I explained that I thought it was an injury and she sent me for an MRI which showed that the fluid around the joint was likely of an injury which had caused severe inflammation. Bingo! She sent me for a needle under ultrasound, directly into the joint.

So here I am nearly 24 hours later, feeling fantastic. I slept so well that I didn’t have my usual 2am dose of pred, but woke up with in a panic at 5am, but for some reason, probably the cortisone needle (?), I was pain free and so just took the normal dose, currently 4.5/5 mgs alternatively. The lack of shoulder pain is enabling me to focus on the taper in that I am unable to identify any niggles more clearly. I realise that this might be another temporary reprieve, but I’ll take it!

I hope the rest of you are managing with all that is going on to place increased stress on an already stressful struggle. Sending love xx

[SheffieldJane]

Great news! Go gently now. 🌼

[LemonZest11 in reply to SheffieldJane]

Thank you Jane, will do. I have come to realise that these reprieves are probably temporary, so will just enjoy some respite. I’ve been thinking about you ... I hope you are managing. x

[SheffieldJane in reply to LemonZest11]

Thanks for thinking of me. I am just puzzled by feeling low level viral all the time. My specific GCA/PMR symptoms have gone otherwise. My break from Tocilizumab, to allow my infections to heal, has had no impact on how I feel generally. I have sourced a supply of 1 mg gastric Coated Prednisalone, so in the absence of any symptom pointers, I will begin my slow taper down from 10 mg Pred again. Not sure if something else is going on with me, like Sjogrens or Fibromyalgia . Not sure how to interpret my symptom picture anymore unfortunately, it used to give me an illusion of control with Pred alone.

[LemonZest11 in reply to SheffieldJane]

I tend to feel headachy from time to time, but I put that down to dehydration and just up the water. I do feel a bit disconnected/dreamy with the head thing, but it is nothing compared to before. I haven’t heard of Sjorgens, do you think one of the others, PMRPRO might know? It’s great that you are down to 10, another milestone. I’m wondering also if the viral feeling might be related to the infections? Honestly, with all the stuff we put into our bodies, I’m not surprised we feel strange. I just hate the pain, and for the moment, that’s gone. Oh Jane, I’m hoping things look up for you.

[PMRpro Ambassador in reply to LemonZest11]

Sjögren's syndrome is another autoimmune disorder that causes dryness - it may be just eyes and mouth but it can affect any part of the body that requires moisture for being healthy or lubrication. A Sjögren's diagnosis requires an antibody to be found in a biopsy (usually of the lip) but there is also sicca syndrome which can accompany a/i illness where you get the symptoms but don't have the antibody. Except for severe cases the management is like PMR - symptomatic. Venus Williams is said to have it - and claims she manages it with a raw vegan diet ...

[LemonZest11 in reply to PMRpro]

Oh you are a font!! I knew you would know.

[SheffieldJane in reply to PMRpro]

Thanks. I certainly have the dryness. I wonder if I have the energy to pursue another unusual diagnosis ?

[PMRpro Ambassador in reply to SheffieldJane]

As I said - much of it results in symptomatic management so whether it is another diagnosis in itself or just an add-on makes little difference for many. It DOES affect some people far worse and there ARE medications that may help.

[SheffieldJane in reply to PMRpro]

That has been my attitude but I did happen to read some alarming data about Sjögren’s Syndrome recently that make me think that it was not altogether benign.

[PMRpro Ambassador in reply to SheffieldJane]

It isn't always benign, no, you are quite right, The main problem in the past seems a common refrain - many doctors don't appreciate the effect it can have on people's lives. Just like PMR and GCA. There are no magic medications that stop the symptoms at source though.

medicalnewstoday.com/articl...

shows how the treatment is predominantly symptomatic because the dryness leads to tissue damage - but exactly the same thing applies for sicca syndrome, the version with the same symptoms but no antibody, and the drug therapy for severe cases is the usual suspects - methotrexate and corticosteroids included.

[SheffieldJane in reply to PMRpro]

Thank you for this. I tick every box - oh dear.

[PMRpro Ambassador in reply to SheffieldJane]

Oh dear xxxxxxxxxxxxxxxx

[MrsNails]

That’s excellent news! I had a Cortisone Injection into my right shoulder a couple of years ago for an impingement & it worked really well 🙏🏼 l had surgery on my other shoulder pre PMR 😳

I hope yours remains much improved, use your arm & shoulder as naturally as possible.

Kind Regards

MrsN

[LemonZest11 in reply to MrsNails]

Oh thank you Mrs N. I really hope it lasts as it sounds as yours did. Haven’t had much luck up until this joint needle. Surgery will be the final option but I really don’t want that! Hope you are well. x

[MrsNails in reply to LemonZest11]

Have they ever recommend Amitriptyline at night to help relax the muscles?

I try very hard to keep my shoulders moving & sit with them stretched out, up n over my head 🙆🏻 every morning.

I’ve just increased my Pred as per Rheumy Nurse been having a very hard time with far too much pain so fingers crossed! 🙏🏼

Take Care

MrsN x

[LemonZest11 in reply to MrsNails]

Yes, I take 1/2 an Amitriptyline at night and it does seem to help. My shoulder had been cause neck pain and that definitely disappeared. I will try that exercise. I have an appt with a shoulder physio in a couple of weeks, she’s more qualified that God so I hope she’ll set me on the right path. Oh good luck with the pred, such a bugger. But you know what to do, isn’t it increase by 5 until you feel better and stay there for a week and then drop? I never drop, I always taper from there because I’m sooo scared!

I will be thinking of you. xx

[Rugger]

Such good news that you feel so comfortable! Long may it continue and you sleep well too.

[LemonZest11]

Thank you Sue, sending all the very best to you. xx

[Bibberty]

Fabulous news

[LemonZest11]

Thank you Bibberty, and I hope you are well and the slower taper is working better for you. It takes time, but as you know, this place provides the best support and love. Take care.