Posts - PMRGCAuk | HealthUnlocked

PMRGCAuk

20,319 members • 38,054 posts

All posts for February 2024

Ending my Actemra next month

Ive been on the weekly Actemra syringe injections for two years. Diagnosed GCA from a biopsy in March 2022. Absolutely no side effects ever. I’m being taken...

Ive been on the weekly Actemra syringe injections for two years. Diagnosed GCA f...

GCAYme

•2 months ago

8 Replies

Better!

I don't know how to respond to everyone at once, but I just wanted to report that the upped dosage seems to have kicked in. I am up 2.5, from 4.5 to 7 for the...

I don't know how to respond to everyone at once, but I just wanted to report tha...

Maggieart

•2 months ago

3 Replies

update re post holiday symptoms.

further to my last post I increased to 17.5mg on Tuesday as I didn’t have any improvement in symptoms. I felt slightly better today and was able to do some...

further to my last post I increased to 17.5mg on Tuesday as I didn’t have any im...

Sheeplegs

•2 months ago

10 Replies

Want to take advantage of all our features? Just log in!

Baker's cysts update

I posted 10 days ago about knee pain and possibly baker's cysts. After blood test showed my crp level at 14 abd wbc at 16.4 I was concerned. My DR wasn't...

I posted 10 days ago about knee pain and possibly baker's cysts. After blood tes...

Monkey321

•2 months ago

25 Replies

GCA Symptoms?

Hi folks. Over the last 2 weeks I've started feeling weaker (than normal). Legs are rubbery and I feel quite shaky. An obvious shake, but also trembly inside....

Hi folks. Over the last 2 weeks I've started feeling weaker (than normal). Legs ...

Missus835

•2 months ago

13 Replies

Tapering

I notice that some need several attempts to taper down to a particular level of pred at which they are pain free. Thus they may experience pain having twice...

I notice that some need several attempts to taper down to a particular level of ...

Yorick123

•2 months ago

16 Replies

When should I start the 'Dead Slow' taper?

Having had a disastrous taper last year, I am determined not to repeat it. I am now down to 7.5mg of Pred, having reduced by 0.5mg every three weeks since I...

Having had a disastrous taper last year, I am determined not to repeat it. I a...

landyjhm

•2 months ago

19 Replies

And ,now another type of pain........

Being diagnosed with PMR in about 2006 and using varying amounts of prednisolone ever since, my legacy is Adrenal Insuffiency plus the usual things like...

Being diagnosed with PMR in about 2006 and using varying amounts of prednisolone...

billydownunder

•2 months ago

23 Replies

Private Dexa Scan

I have been on 40mg pred for 3 weeks for positive GCA.I have agreed to take weekly alendronic acid as advised by my rheumatologist, and took my first dose...

I have been on 40mg pred for 3 weeks for positive GCA.I have agreed to take wee...

kalgoorlie

•2 months ago

59 Replies

Pred dose increase gradual or fast?

I am on a permanent dose of 6mg Pred for PMR. I still feel dodgy and if anything probably worsening. I want to try increasing my dose to 10mg to see if it...

I am on a permanent dose of 6mg Pred for PMR. I still feel dodgy and if anythin...

sharpedge

•2 months ago

16 Replies

stopped Pred but pain & stiffness came in knees. GP says it isn’t PMR

I stopped Pred about 3 months ago. My knees & hands have started being very painful- I could hardly walk & couldn’t play my musical instruments. Sent for X...

I stopped Pred about 3 months ago. My knees & hands have started being very pain...

HalleysComet

•2 months ago

5 Replies

Update on what was thought was PMR

He'llo everyone , I first posted on hear after my gp said he thought I had PMR. I took 20 mg of pred for 10 days. No improvement so more blood tests, and...

He'llo everyone , I first posted on hear after my gp said he thought I had PMR. ...

Charlieanna12

•2 months ago

9 Replies

PMR and brachial neuritis

It looks like I have developed a fairly rare condition called Parsonage-Turner syndrome (PTS), also called brachial neuritis. It started with terrible pain in...

It looks like I have developed a fairly rare condition called Parsonage-Turner s...

dmart7

•2 months ago

8 Replies

Leflunomide - be alert!

I was diagnosed with severe bilateral ulnar neuropathic with sensory abnormalities in lower limbs and median and radial nerves in upper limbs. The neurologist...

I was diagnosed with severe bilateral ulnar neuropathic with sensory abnormaliti...

Steal

•2 months ago

7 Replies

Advice and some reassurance please

I finally got my G.P to increase my steroids to 15mg with reluctance and a referral to Rheumatologist. He is unclear about this being PMR. Hey Ho. Anyway,...

I finally got my G.P to increase my steroids to 15mg with reluctance and a refer...

Cooper02

•2 months ago

17 Replies

GCA Duration Expectations

Hi All, I was diagnosed with GCA last October. Presently down to 12.5 mg. prednisone and Actemra and feeling quite well. Is it reasonable to hope that one...

Hi All, I was diagnosed with GCA last October. Presently down to 12.5 mg. pred...

Lenore58

•2 months ago

12 Replies

decaffeinated tea

good morning, I’ve read on the NHS that caffeine drinks are a no no on pred, is decaffeinated tea ok ? I know there is a still a small amount of caffeine...

good morning, I’ve read on the NHS that caffeine drinks are a no no on pred, is ...

VueltaSkelta

•2 months ago

6 Replies

Giving In

Tonight I just had to give in to whatever could stop the pain. I try very hard not to take too much of anything, knowing my body will just want the same, if...

Tonight I just had to give in to whatever could stop the pain. I try very hard n...

Maggieart

•2 months ago

13 Replies

Update on worsening headaches and scalp tenderness

Ten days ago, I increased my Prednisone to 65 mg. for scalp tenderness, jaw claudication for 24 hours, and headaches.My scalp tenderness, and ear pain has now...

Ten days ago, I increased my Prednisone to 65 mg. for scalp tenderness, jaw clau...

Bummed24

•2 months ago

3 Replies

Adrenaline glands?

Hello I was just wondering if my adrenaline glands are low.I managed to taper to 7 mgs aft four years.Within 3 days iam very tired and more anxious.Do I just...

Hello I was just wondering if my adrenaline glands are low.I managed to taper to...

Hunter134

•2 months ago

6 Replies

Recently diagnosed with PMR....Joined grp as I just hoped I could get clarity and advise.....

As I put recently diagnosed with PMR....Some days I feel as if I'm imagining everything .....as the pain has subsided. Just feel so lethargic. Are my eyes...

As I put recently diagnosed with PMR....Some days I feel as if I'm imagining eve...

Tescohednesford

•2 months ago

37 Replies

Flare advice

Diagnosed December 23 and started on 15mg, not started tapering yet. Feel 85% better most of the time but still a bit of background aches and stiffness at...

Diagnosed December 23 and started on 15mg, not started tapering yet. Feel 85% be...

Grandmaziggy

•2 months ago

11 Replies

Alendronic Acid

Hi. I've been taking Alendronic Acid for 5.5 years with no problems. Now I'm told I need a treatment break for 2 years. Why would this be? I'm on Letrozole...

Hi. I've been taking Alendronic Acid for 5.5 years with no problems. Now I'm tol...

Walkingwizard

•2 months ago

1 Reply

Aches and pains PMR?

I have reduced methylpred to 4 mgs. Thought I was doing ok. Both shoulders hurt but with different exercises. My right buttock /hip has been very painful....

I have reduced methylpred to 4 mgs. Thought I was doing ok. Both shoulders hur...

Merryfield

•2 months ago

3 Replies

question re PMR and blood work

I have just been started back on 20 Mg of Prednisone after a major flare I am having blood work today Will this affect my CRP and SED rate . Due to the...

I have just been started back on 20 Mg of Prednisone after a major flare I am...

Darcy2000

•2 months ago

8 Replies

Thankful

So thankful to all you fellow suffers for the understanding, information, advice and support you all give.

So thankful to all you fellow suffers for the understanding, information, advice...

Bothan

•2 months ago

3 Replies

A useful option-gastro resistant empty capsules

a post yesterday reminded me to tell you all that I’ve been taking my preds in gastro resistant empty capsules for a couple of months now. This means I can...

a post yesterday reminded me to tell you all that I’ve been taking my preds in g...

Freshairfiend

•2 months ago

42 Replies

Hand pain update

Hi everyone I thought it would be useful to update you on the hand pain I have recently experienced. On the sound advice of everyone on here, I increased my...

Hi everyone I thought it would be useful to update you on the hand pain I have...

Charliepeace

•2 months ago

18 Replies

Curious about thin-skinned ears---Prednisone?

Does anyone else have issues with the edges of their ears getting raw? My pillowcases are quite smooth, and periodically, I have a problem with the edges of...

Does anyone else have issues with the edges of their ears getting raw? My pillo...

Grammy80

•2 months ago

23 Replies

Advise please on prolapse operation

Hi, not been on site for a while but read posts everyday. I have successfully reduced my pred to 4mg from 15mg starting in 2017. Had a few flares due mainly to...

Hi, not been on site for a while but read posts everyday. I have successfully re...

Pixieharmer

•2 months ago

15 Replies

Posts - PMRGCAuk | HealthUnlocked

PMRGCAuk

All posts for February 2024

Ending my Actemra next month

Better!

update re post holiday symptoms.

Baker's cysts update

GCA Symptoms?

Tapering

When should I start the 'Dead Slow' taper?

And ,now another type of pain........

Private Dexa Scan

Pred dose increase gradual or fast?

stopped Pred but pain & stiffness came in knees. GP says it isn’t PMR

Update on what was thought was PMR

PMR and brachial neuritis

Leflunomide - be alert!

Advice and some reassurance please

GCA Duration Expectations

decaffeinated tea

Giving In

Update on worsening headaches and scalp tenderness

Adrenaline glands?

Recently diagnosed with PMR....Joined grp as I just hoped I could get clarity and advise.....

Flare advice

Alendronic Acid

Aches and pains PMR?

question re PMR and blood work

Thankful

A useful option-gastro resistant empty capsules

Hand pain update

Curious about thin-skinned ears---Prednisone?

Advise please on prolapse operation

Search posts

Pinned Posts

Latest poll

A quick SURVEY on COVID-19 & PMR/GCA/LVV Since the start of the COVID-19 pandemic have you experienced any of the following? Part 2

Topics

Archive