Save me from ignorance

[Kneeknit]

No question. I want to learn about PMR.

[jinasc]

Hello Kneeknit. I just read your profile and am sorry if you feel this site is unfriendly, that is the last thing we want to read. Can you explain why you feel it is unfriendly as you have not yet asked any questions.

If you would like to read the British Society of Rheumatologists Guidelines on the Diagnosis and Treatment of PMR you could follow this link it might help you to begin to understand PMR:

academic.oup.com/rheumatolo...

Come back and ask any question, however silly you think it is and someone will be able to help.

The Pinned post section (Right hand side of the page is helpful.

[Kneeknit in reply to jinasc]

I explained in my history why I find the site is difficult for me. Even in 2021, there are morons lik me, who find technology difficult. I do not want to offend anybody, specially when I need help.

[jinasc in reply to Kneeknit]

You will not offend anyone if you just ask you just post any of your questions as you have posted your answer to me.

[Kneeknit in reply to jinasc]

I have not being to a Rheumatologist. Not sure if my arthritis is rheumatic or other. Not sure if that is the cause for my PMR. My question: should I request a referal?

[HeronNS in reply to Kneeknit]

Mostly a GP can handle PMR and should be able to diagnose you. Referral should only be necessary if your symptoms are more complicated. Has your family doctor given you any advice at all? The doctor I had when I was first presenting with PMR symptoms assumed it was only arthritis getting worse, but after a few months I was nearly crippled from pain and a new doctor suspected PMR right away, ran a bunch of tests to rule out other things, and started me on prednisone. I was on pred for one week, went back to see her, told her how great I now felt, and she then wrote out a prescription for continuing pred. For a year I went back for blood tests fairly regularly, and later less often as I was doing well. I tapered the pred dose very carefully with advice from the forum. (I've been at a very low dose since 2016, having been diagnosed in 2015 and started at 15 mg pred for five weeks before beginning taper.)

[Kneeknit in reply to HeronNS]

Thank you. My GP is very good and went to all steps you went through. I responded to Prednisone withing days and was follow up for a while. I had a total knee replacement in November and I had a relapse. Did not know I could relapse, so I was dealing with extra pain. Tests were done again and back to prednose ( 15 mg). Still have a bit of difficulty dressing and doing my hair, but doing well.

[HeronNS in reply to Kneeknit]

That sounds promising. I guess it's just that old thing, patience - very hard for those of us with PMR as we've nearly universally been an active bunch! How is the TKR? I may be facing same in a while so interested to learn of other's experiences. Take care.

[Kneeknit in reply to HeronNS]

The knee is doing really well. I got to use it sooner than expected. Since I was not on prednosone and not with pain medication for the surgery and I had a relapse of the PMR the pain was intense the first and second day. After I cried a little, I got medication for the knee and could do physio without trouble. Make sure you take the medication for pain ahead of it.

[Janetknit in reply to Kneeknit]

My username is Janetknit , so I’m assuming you are lover of knitting!

Knitting has become the best distraction from thinking about the changes in my life from PMR. A lot of my struggles with the first year of treatment was feeling so less productive in my personal life. This forum is my daily read , with clever ,

Informative members.. it has truly seen me through with patience.. that and knitting of course... Welcome

[Kneeknit in reply to Janetknit]

Thank you! Yes, I knt and enjoy it, but I am a slow knitter. I also crochet a bit!

[DorsetLady PMRGCAuk volunteer]

Hi,

Sorry you’re finding forum unfriendly - I think (hope) you mean the technical site of it, not the contributors.

If you tap this link, and maybe the print the information it might be easier for you to understand. - healthunlocked.com/pmrgcauk...

As jinasc has said, please stick with us, we will help you all we can.

[Kneeknit in reply to DorsetLady]

Thank you! Not as difficult as when I started!

[DorsetLady PMRGCAuk volunteer in reply to Kneeknit]

Good.

[PMRpro Ambassador]

I fear your problems are with HealthUnlocked, not with us! And I'm afraid we can't help with their idiosyncrasies.

Apart from DorsetLady's intoduction your best way to find out about PMR is to read broadly within the forum and ask questions about things you want to know. Some of us could write for hours about PMR and still not have mentioned/answered your particular problem!

[Kneeknit in reply to PMRpro]

Agree on my difficult to fill in information and I am talking to other people in this forum. My first forum!

[PMRpro Ambassador in reply to Kneeknit]

There is a first time for everything!

[piglette]

If you have a good GP and PMR, you should not normally need to see anyone else. 75% of PMR patients are in this category. Apart from pred you should be prescribed with vitamin D with calcium and also offered a Dexascan. PMR is life changing so take it easy and don’t try to carry on as if nothing has happened.