Pmr and eyes

[Freya32]

Hallo all A Happy New Year to all. Get well soon.

Just wanted to post y thanks on here for all useful advice offered. And to give an update.

I have been on predisolone 15mgs per day for about 9 /10 weeks now after PMR diagnosis following blood tests.

The pred worked for me within 12 hrs of first dose an from being unable to move I can now do all I want and need to.

I had been going slowly downhill over thel ast few years but thought it was just old age and grief and the effort nursing husband over 7 yrs dementia coupled with my severe arthritis. He died almost a year ago.

Now

I feel so much better. Much more mobile in everyday living. Even able to have a shower sometimes.

All pains gone even arthritis pains,( from 14 yrs arthritis,) apart from R shoulder which needs replacing and hands which a kind person on here advised they would take a while to gdt better.... but at least they are improving.

After taking pain killers daily for years i now only have an amytriptalene at night.

Only thing is blood pressure very erratic aand a bit of bother with eyes.

Have cataracts in both but they feel irritated and do not work so well.

Can steroids affect them at all?

Sleep much better now the pain has gone or diminished.

Sometimes sleep in the day as well.

If you feel tired then sleep. Even a short nap is good. Sleep heals

Only downside of pred is that I now have an appetite....which is not helpful weightwise.

And they wont give me more than 28 tablets at a time.

I take vit D3 with K....have been taking it for seven plus years.

Also takevit c and Bvits, with R-AL Lip as read it was good fornerve cell mitochondria regeneration in olddies.

I will see the GP sometime in January.

So I can say pred saved my life ..or what is left of it.

I have found this forum invaluable.

Thank you all

Freya

[SnazzyD]

Hello, I’m glad you were released form the clutches of PMR pain. Pred can cause cataracts, change eye pressures and temporarily affect focussing. My optician tested my pressures every 3 months and the cataracts every 6-12 months. My focussing issues changed with dose so it wasn’t worth buying new specs every few months. If you haven’t seen an optician recently it’s worth doing. Diet wise, if you reduce the amount of breas, potato, rice pasta etc weight and blood sugar is easier to control when on Pred.

[PMRpro Ambassador]

One of the adverse effects of both PMR and pred is dry eyes - get some eye drops for dry eyes - the difference is amazing! Otherwise I had similar problems to Snazzy and moving your specs up and down your nose is cheaper than new lenses!

Cutting carbs drastically - especially processed carbs, added sugar and some fruit - will help curb the appetite and help avoid pred-related weight gain.

If you have PMR your practice needs to accept that you will be on pred long term and they might as well save the NHS money by giving you enough pred for two or 3 months at a time - every time you get a prescription the NHS pays the pharmacist a dispensing fee - which is the same whether they give you 5 tablets or 100 tablets (or more). This applies for each dose - and you will probably need 1mg tablets once you start to reduce - because whatever he does, don't accept him telling you to reduce to 10mg, it is unlikely to work! You should be looking at reducing very soon, 2 months is really an ideal time to start the taper to find the lowest effective dose.

[Freya32 in reply to PMRpro]

Oh thank you,That is good to know its dry eyes and not eyesight deteriorating.

I will follow your suggestions and get something for eyes.

The cataracts have been there some years. Caused by detached retina and a tia and familial.

Had new specs last year and ophalmologist said i should get cataracts done but no chance now with N HS in the mess it is in.

Just thankful it is not glaucoma.

Hoping they will last me out.

I did read that pred is not advised if you have glaucoma but nothing about cataracts.

I have asked for a months supply of pred twice now but they still wont give me more than 28. Daughter tra fers them into loose capped bottle as hands cant open blister packs or anything yet .

Will ask again when I see GP.

I take magnesium complex for leg cramps and find that helpful.

Yes !note i must cut carbs , had to do that with Lyme disease.... I think my diet, good but appetite is now abit too good.

No will not let him take me off them.

Not going through months of misery again.

Need to be able to care for myself.

If these little whte pills allow me to do that then well and good

I think i am on the lowest effective dose.....when I had only enough left for two 5mg a day.....for 2 days ,

I felt the difference immediately.

Shoulder pain returned and hands were unbearable.

Body knows best.

We had Covid again and all got over it using Chinese herb coughmixture, and

lemon, honey and ginger in hot water...

Only my son in law is covidvaxed and he brings covid home to us every ....

He has it badly and we have it less so. !

Keep safe and warm all.

[PMRpro Ambassador in reply to Freya32]

There is a BIG difference between 15 and 10mg - even 1/2mg can be the difference between OK and not. Which is why I say you will need 1mg tablets for tapering purposes!

[Freya32 in reply to PMRpro]

Hallo Found this post...from way back.

You were so right.

I need some 1 mg or 2,s to wean.

as am still on original dose 15 mg a day... 10 isno good.

I am now trying to cut 5,s in half....useless. bits shoot everywhere.

One day I try 5 mg and a bit in morn a nd 5mg in evening...but body knows and the pain returns.

Will see if pharmacist will give me some one and two mgs preds .

Weight piles on... 71 k. Despite the chromium and cutting carbs.

Some say berberine helps. Has anyone tried it?

Cannot exercise as need stick and a steady arm to walk.

Just potter....trying to clear mountains of accumulated stuff... cannot burn before reading it and then definitely cannot burn.

An impossible task.

But the bluebells have been wonderful and the apple blossom and now the scent of the hawthorn so uplifting and I have nine flowers on Gertrudee Jeykll rose......that my moon face and fat neck and equally fat abdomen pale into insignificance....for now.

Got to keep your spirits up in this PMR thing.

.

[DorsetLady PMRGCAuk volunteer in reply to Freya32]

How are you trying to cut tablets? Knife?

Try a pill cutter - this is good brand - from any pharmacy/chemist - many supermarkets or online

Why have you been on 15mg for so long?

Pillcutter

[Freya32 in reply to DorsetLady]

Thank you Dorset Lady,Good idea.

Yes I use a knife...hands not good yet... better...slowly.

Will send off for one. Only heard of tile cutters..

Why so long...because gp cut it down from 15 to 10 suddenly without any consultationand I couldn't manage. Don't think he knows about phasing gradually. Do not think any other of his patients have it.

Tried taking only ten...disaster...all pain returned...hands very bad.

Not seen Gp since Nov.

Chemist sends me up an ample sufficiency now. I don't have to ring surgery for script.

Never seen a rheumatologist in the 18 years of osteoarthritis.

Bless you...very helpful.

[PMRpro Ambassador in reply to Freya32]

You won't get 1s or 2.5s unless the GP prescribes them, 2.5 is easy enough using a pill cutter though after a bit of practice.

And a pair of crutches allows more freedom to move around if you need a stick and an arm.

[Freya32 in reply to PMRpro]

Thank you,Ordered one . Coming tomorrow.

Need human support... stick, walker , cannotdo crutches....need a hand free.

Have sudden turns and cannot afford to fall. Dodgy knee and hip give way suddenly or BP drops suddenly very low, from quite high. Have ischemiac heart disease.....according to hospital....

GP has never mentioned it.

Extra weight not good for joi nts or heart so need to lose it fast.

Never been more than 9 Stone.

Rails etc in house. Outside is the problem.

Kind lady takes me out .I hold on to her. She has helped me since death of my husband 16 months ago.

Thank you.

[Jackoh]

Happy New year to you too. X💐

[Freya32]

Thank you ,Jackoh,