Im on 20mg of pred a day -have been on it for only a short while--11 days--have noticed much improvement in my body --no aches,pains at all hardly--just a tad in my arms tonight.
What I have noticed past 2 days is thrush and it looks like Im starting a small abcsess down there as well.Ive always been a bit prone to abcsess around that area and had an op to remove a deep seated one 15 months ago, :cry:
I understand the steroids can raise blood sugar levels and that is proberly what is happening...I was boarderline diabetic last year also....so what will happen now I wonder? will the steroids be dropped down a bit? With the bloody tinnitus as well Im feeling quite depressed at the moment...
had another blood test done today--poor nurse had 6 goes at getting blood from me..and am seeing the doc on Fri evening...while its great to be out of pain and able to get up and down stairs.off sofa etc if Im going to get all these other things going wrong whats the point..might as well stay off the steroids and take the painkillers :cry:
Hello Dianne
It's bad enough being diagnosed with PMR without all the added complications, I know. But, the steroids have made you feel so much better haven't they so don't be in too much of a rush to get off them or the pains will return. If your blood tests have returned to normal you will probably be advised to take a small reduction in the dose (and it should only be a SMALL reduction).
As you have been diagnosed \"borderline diabetic\", you will already be aware of the foods to avoid (high carbs such as white potatoes, white rice/pasta which turn to sugar in your body) and these foods can also help to avoid too much steroid weight gain. No doubt you will be having your blood sugar tested regularly along with the routine blood tests ESR/CRP for your inflammatory markers.
Like you, my friend has trouble parting with her blood and on the last occasion two nurses gave up and asked her to return to see someone more senior (more capable?!). The \"more senior\" nurse took the blood with no trouble at all. One tip is to drink plenty of water before your blood tests.
Hope this helps and that your appointment goes well with your appointment tomorrow.
MrsO
Hi Dianne
Im sorry you are feeling so poorly Personally I know I couldnt have functioned without the steroids so side effects ( weight gain ) is worth it for me as I can live not as I did before but pretty well
I have always had very low blood sugar all my life so have had no problems in that direction but as Mrs O says diet will be very important
Also the thrush is not something I have suffered from but Im sure others have written about this on here or perhaps the other forum
Wasnt the tinnitus caused by the painkillers ??
Perhaps all these things are happenning because you got very run down with the pain before the steroids I personally wouldnt give them up yet as if they are helping with the pain and mobility thats what counts and you should be monitorred for everything else very carefully
Hope all goes well with your appointment
Mrs G
just tested my blood with my hubbys machine--its 14 so far to high and explains the thrush etc.The abcsess burst this morning so thats feeling better!
Yes the tinnitus was caused by some anti-inflamertries -Naprysan I think it was called...I think thats the worst thing of all at the moment!
I was happy whenI jumped on the scales this morning to find Ive actualy lost 4lb so that has cheered me up no end! My moods seem very up and down at the moment--maybe its the tablets or maybe not...I do think I over do things at times which dosent help---am going to try and rest more and keep track of my diet better!
Am writing everything down to take to doc --have an evening appointment and Ive found it can be rushed a bit so dont want to forget anything thats happening!
Many thanks for all your advise--it really helps being able to come on here and off load so to speak!
Hi Diane :artist:
I also lost weight when I first went on steroids, everyone was very envious at the time (but I've made up for it since, put about a stone on since getting down to 10mgs!). I actually found that some things improved when I started on the Pred. My ears had been 'weeping' for years. They cleared up. I'd had haemorrhoids off and on since the birth of my first baby, they cleared up (oh joy!). I had psoriasis mainly on my scalp, that cleared up. So for me I had added advantages to the PMR relief :D Pleased to hear the abcsess has burst, that must be a really miserable thing to have to put up with. But a sugar reading of 14 - that sounds high. I'm no expert but my Grandson had to keep a close check on his sugar levels after a stay in hospital and I know they wanted it to be between 5 and 8. But he's a teenager so I guess that could make a difference. As I said, I'm no expert. I'm pleased you're writing everything down, I always do, my Doctor laughs because halfway down the list I often ask for a pint of milk and a packet of biscuits because it looks as though I have a shopping list. Don't let him/her rush you. There will have been plenty of times when you'll have popped in, sorted a small problem and popped out again, so you'll have earned a proper, full length, Doctor is 'all ears' appointment.
Good luck and let us know how it goes.
Love from Lizzie xxx
Well been to docs--my blood sugar was 16.7 today so she wants me to cut back to 15mg of steroids tomorrow for 2 weeks then down to 10mg after 2 weeks,
I hope the pain wont come back...am going away on holiday next week.
The tinnitus is a little better today :lol: am having my ears syringed next Friday before I go..so hopefully that will help-if not Im seeing the ent specialist and also goiing to see the rhumaltologist at Hereford Hosptial,,,
Where are you in Shropshire? I grew up near Leintwardine!
It's all very well reducing your steroids but the PMR will be back with a vengeance! Much tighter dietary restriction and possibly other treatment may need to be thought about.
all the best
Eileen
Crikey Diane :artist: 20mgs to 10mgs in four weeks! I think that's going to be very tough. There was someone on this forum who was advised to make a dramatic drop (I think it was Amycakes, apologies if I'm wrong) but I seem to recall it didn't work. I'm no expert, but I can't see how your Doctor can sacrifice your PMR treatment to address another problem. I do hope you can cope with this huge drop, but please, the first hint of trouble, get straight back to the Doctor :?
Love from Lizzie xxx
Eileen -Im in Ludlow..not far from there--lovely part of the country!
I must admit I was a bit worried about the drop being so quick after the reading Ive done on here of peoples experiences,
I will play it by ear I think and if the pain is coming back will up the tablets again...I suppose I can cut the 5 -s in half.
I have a big workshop in the morning with 14 people coming to paint..so hope I dont get any aches and pains then :roll: :artist:
Ive also got a few busy weeks coming up either side of my break and I need to be 100%--Im self employed and I HAVE to work as my hubby dosent since his heart attack 8 years ago.
I did think the doc would give me something for the blood sugar levels but she didnt and again I felt quite rushed in there--I will see how I am and maybe see another doc during the week, no point in going away if Im going to feel ill.
I did have a bit of stiffness and aches in my shoulders and knees today as well so am quite dubious about dropping down so quickly.
Oh well -time will tell I suppose---one thing -the tinnitus is better than its been--can think quite straight at the moment!
Dianne
Oh dear, that's a steep drop but I can also understand your GP's concern about your blood sugar. If it was me, in the first instance I would research all the foods that are good for diabetes and avoid all those that are bad, for instance, no white potatoes, parsnips or any other foods that turn to sugar. Sweet potatoes are ok. 15mgs of steroids often controls the symptoms of PMR but it would be preferable to reach it by way of 17.5 for a week or so first to see how you are. Good luck in this.
MrsO
Mrs O --I will see how I am tomorrow dropping 5mg....if I dont feel well or if the pain is coming back I will try 17.5 --no way do I want to feel like I did again.
I am trying to be good with my diet..but there is some room for improvment no doubt....am going to check my blood at home so will keep a close eye on it..
dianetheartist
A close friend of mine, who has Type 2 diabetes, developed PMR and the steroids started to play havoc. The Rheumatologist, referred her to the Diabetic Consultant and they got it under control with some sort of injections. Normally Type 2's are just dealt with by the GP and not referred to the Consultant like Type 1's.
I cannot ask her more as she is on holiday, but it might help you to know there is other help available for that particular side effect. Mind I only know about that one person, it maybe, as usual, that what works for one does not for another. But until they have explored your situation - who knows the outcome.
Good Luck.
Sorry Dianne that your two illnesses are fighting each other
I am a bit surprised at your Dr reducing your steroids the idea is you reduce when you are pain free not before I only know about Diabetes through friends who have it and realise from them how important diet is
I would have thought you should have a referral to a special diabetes clinic so everything can be ballanced
You are obviously a very busy person and need to feel fighting fit ! So very best wishes and i hope everything works out for you
Mrs G
Your plate is certainly full, Diane. It doesn't help to have two treatments fighting one another and self employed so no sick pay
Best of luck. Just off to visit your website. Betty
Wow Diane :artist: what a talent you have (just had a peek at your website!). The only think I can paint is a front door. Artistically useless. I do hope today's drop has gone OK. Just a thought, do you take enteric 5mg Pred? You were talking about cutting them, very difficult with enteric tablets and sort of defeats the object. Did you know you can get 2.5mg enteric coated tablets? I find them very useful as I can mix and match when reducing. Just a thought.
Hope you have a good weekend,
Love from Lizzie xxx
Hello Dianne
Do hope today's drop is going well. BTW Amazing gallery of artwork and very comprehensive website - clever you! I can draw a house like a 2-year-old! :roll:
MrsO
Yes - you do really need expert advice re the diabetes. It's longterm high uncontrolled blood sugars that cause the trouble so rushing you to get off pred at a drop rate more than 10% of current dose each time will just bring back the PMR and you will be even worse off. Insist on a diabetologist referral as an emergency - that is more important than a rheumy I think at this point. But don't let them chuck out the baby with the bathwater.
I went to school in Leominster and swimming, dentist, shopping etc in Ludlow as a teenager.
Eileen
well I had 15 mg this morning and already can feel the difference in my aches and pains...am stiffer certainly. Ive had a really busy (fun) day in the workshops with 14 other ladies...but havent had chance to take my blood sugar levels.Have eaten at wrong times today somehow-and forgot to donit 2 hours after ..
I was diagnoised as boarderline diabetic last year and told to watch what I eat but thats all--its always been around 6 after that until now on the steroids.
My hubby is diabetic and uses the Victosa injection instead of insulin along with a cartload of pills for it as well..so am using his machine to check my bloods...
What is enteric? The pills I have are Lloyds chemists own brand ones...can I cut those? I do have a proper pill cutter!
The bloody tinnitus is back--had it all day..am more than a little fed up with that...
thank you all for your kind comments about my art..but as long as you can hold a brush you too can create art like it..had 14 very happy ladies go away today--13 of them were 1st timers..I will be uploading their photos onto my website and blog in a few minutes..take a look at the student results page!
Im on the market tomorrow..I think i wll be having 17.5 in the morning because Its miserable feeling the pain coming back..
Loved you website and am full of admiration. I've had children in my infants classes who could draw better than I can!. I have infuriating friends who insist that \" anyone can draw\". I retaliate by saying that anyone can play the piano which is just as untrue.
Re cutting pills. The enteric coated ones are sometimes prescribed for people whose stomach linings are irritated by the Pred. though I understand that there is some contraversy as to whether the coated ones make much difference. If you DO have the coated ones you should not cut them as that then exposes the inner drug.
Some of us find that taking the pills with a good dollop of organic yoghurt is a help.
Hi Diane,
I also had a look at your website and the paintings are beautiful...
I used to do a fair bit in 3-d, using my jigsaw with MDF to create various shapes( mainly cartoon/film characters) then painting with acrylics, but haven't been able to do much in last two years as the vibration of the jigsaw hurt my hands :cry: .
Most of the work that I did was for sale at school /charity craft fairs...have never earrnd any money from it, but enjoyed it none-the- less.
A few friends & I also used to customize plain wooden sweeping brushes to co-ordinate with peoples kitchen colours and their own interests....lots of abstracts , but also lots of botanical influences.
I keep intending to get back to dabbling in art again, but the last few months I have been barely able to write my own name, let alone draw or paint :roll:
I hope you get your blood sugars and the PMR under control soon, but do think that you maybe need to see an endocrinologist as a priority as the levels of your glucose need be addressed to prevent further complications..
Decreasing the steroids may well help with the sugar levels, but what use is it to have a normal glucose level and be incapable of functioning because of the PMR :? :?
No doubt your Dr has the best of intentions....... but unless they have suffered from PMR themselves (unlikely :wink: :wink: ) then they have no idea what the implications of reducing steroids too quickly has on day -to -day activity.
Hope you get some relief and start to feel better soon,
Best wishes,
Pauline.