Prednisone

[smiley67]

I seen my rermey today she said to go to 10mgs one day and 7.5 mgs the next day for one week and drop to 7.5 mgs for 4 weeks then to 5mgs till I see her in March. I have been on prednisone for 9 weeks now. Is this ok am in the USA and they seem to do things differently here. am a diabetic so she wants a faster withdraw for me.

[polkadotcom]

They definitely do things differently over there, Smiley. I realise that you are diabetic, but by the time March arrives you will have only been on steroids for 4 months, and I don't understand how your Rheumy thinks this will help? When I was first on steroids I would never have been able to consider this fast and short a course, I was in too much pain and discomfort. I would most probably have been bedridden if I had tried it as I was unable to walk more than a few steps, unable to turn over in bed, unable to dress myself, shower, bath - in short, I would have had no life outside the house at all and a very limited life inside the house. I know I have already said that I am T2 diabetic anyway.

If your pain allows you to cope with life without steroids, then why were you started on them? Smiley, this does not make sense to me. I was (finally) diagnosed at age 57, and I was still a full time worker quite apart from running a household too. Due to steroids I was able to live a reasonably full life and finally retired from working just before I was 66. Going without steroids would not have given me that life and truthfully, I would not have wanted it.

I am still diabetic 13 years after that diagnosis and still on steroids. I now have other medical conditions which don't have anything to do with either PMR or GCA but which require a small amount of steroids. I will be 70 this year and - apart from the limitations from the other conditions - live a 'normal' life.

I so hope that you are able to cope with the course she is setting you, but I cannot advise you whether that course would be 'ok' because I have simply not come across the situation before. Perhaps there will be others who can help you? Hopefully there will be more replies for you soon.

[PMRpro Ambassador]

I agree with you completely polkadotcom - I simply do not understand why doctors even suggest putting someone onto pred when they then intend to reduce the dose at a rate and to a degree that cannot control the symptoms. After all - they usually know when someone is diabetic and even if the pred results in steroid-induced diabetes, removing the pred still leaves you with one of the problems: PMR.

Nowhere in the medical literature does it suggest that anyone could reduce like that - and it is slowly being realised that the slower you go, the smaller steps you take, the more likely a reduction is to succeed in getting you down to a lower dose for the long term.

We have seen this before in the USA and, to be honest, the most likely successful answer is to find another rheumy who will not be so cavalier. In the UK PMR is generally managed by a PCP - have you got a good and thoughtful one of those?

A trial in the UK had good results using leflunomide for patients who needed to get off pred quickly. Might your rheumy consider investigating that if so intent on stopping the pred? - they will be used to using it for RA.

But if the pred is stopped I can only envisage one result unless you are very lucky: the PMR symptoms will return.

[soojay]

I gave my Dr.a copy of PMR(this website} details.He was pleased,and said he would pass it on to Nurses too.Gong hei fat choi to you all,in the year of the Horse.Wear red today.Sooxx

[smiley67 in reply to soojay]

I gave my rhumay a copy she looked at it and gave it back. I guess she wasn't interested. Their are only 3 rhumay where I live and 2 are not good . The one I go to is the best one around me.

[iforget]

My GP referred me to a rheumy immediately because of my complex medical situation but the concern as always been that once started on pred this would be a long-term commitment to a minimum of two years on steroids. I had not wanted the pred but simply could not continue as I was without steroids unable to function or care for myself. As I understand it the pred is not a cure for PMR and steroids simply manage the inflammation while the disease runs its course....and that is generally considered to be approx 2 years on average hence the two year minimum on steroids I am over a year in now, dropping very slowly and still feeling every drop...and I am a way off 7.5mg yet.

I know we are all different and things are done differently in the USA , but from what I have learned about PMR, this approach does not make sense to me....however if it works for you then great... if its not working - and since you are asking the question I am guessing it is not working for you - then maybe a second opinion is needed?

[Whittlesey]

Hi Smiley 67, I am posting from the U.S. also. and there do seem to be some differences. I am wondering, are you being treated for PMR or GCA? I am being treated for GCA and the initial dose is higher, I believe than for PMR. If you are being treated for GCA -- my initial dose was 80mgs. I was then hospitalized for a flare and they were giving me 260 mgs of medrol every 6 hours by injection. After 3 days of that, I was getting pretty sick. I began to refuse to take it every six hours and at that high dosage. They then checked my eyes and said that the swollen discs were no longer swollen, and I could go home. They told me to continue at home on 80mgs and to then reduce with my rheumatologist. I did not have a good rheumatologist at the time. She said to reduce, unless I had vision problems, then either increase or go to the hospital. I got down to 5 mgs and stayed there for about 10 months (felt the best at that level --). I was diagnosed during that time period of reduction as having Cushingoid symptoms and one doctor wanted to try a biologic. When I got down to 5mgs all symptoms including the Cushing's syndrome symptoms were better or manageable. I am now down to 3mgs and weekly injections of .3mgs of methetextrage and am ok with this. I still have the Cushing symptoms.

I agree the English seem to reduce more sensibly and with better medical advice. This is a rare disease and in the U.S. it seems they don't want you go lose your eyesight, so they use huge amounts initially. I felt horrible on the high dosages and was even going to risk the negative outcomes. I reduced quickly at first and then when the Cushing's symptoms were really giving me a hard time, I reduced more slowly. I am very worried about Cushing's syndrome which can change to Addison's disease (I am 61) and would like to be off the prednisone completely. I still at times have a high c reactive protein, so I am still on the low dose of steroids. I have been hospitalized twice for bad situations and both times they "upped" the medrol to 20 mgs (they wanted to increase it to 60mgs, but I refused, knowing what would happen after -- the Cushing's symptoms). The flares worked out ok (have three arteries that are dissecting, so this may be systemic) and I reduced from the 20 bit by bit to the 5mgs. It seems my adrenal glands are "coming back" or working again, but still I can get fatigued by doing things which did not used to bring this on.

I would try this system they are using in England for reduction. There are some very posts on this blog and this type of reduction seems to work in a better way and stops both the flares and the "instant" fatigue that can happen with a big drop in the prednisone.

If you have the PMR, it is a little different, I think, with a smaller amount of prednisone, given to begin with.

My headaches (from the GCA, two years ago) are for the most part, gone.

wish you luck, and much good health. all my best, Whittlesey NYC U.S.

[Whittlesey in reply to Whittlesey]

In the third to last pp -- should have texted, "There are some very good posts . . . " best, Whittlesey

[Hidden]

Hi smiley67,

If you are still coming in, can you tell me one thing? What symptoms do you have now?

If you are feeling that your symptoms are not being managed, then there's no way you should be following this advice.

Many of our members are diabetic and, considering it's an illness that is usually well controlled by correct medication and or special diets, I think that diabetes should not be an excuse to reduce pred too quickly. Prednisolone does not cure either PMR or GCA. It combats the inflammation and pain of both, prevents flares and makes life bearable. Please keep in mind that GCA is a very dangerous illness and can be induced by PMR.

All of us on pred should be following the diet recommended - no added refined sugar or salt. If it tastes sweet, don't eat! I try to stick to it and so far, so good.

Best wishes,

Pats.

[smiley67 in reply to Hidden]

Last night I had a high of 310 sugar after a shot before dinner and that was 4 hours after I eat. Today I had stiff hands and legs when I walk and not pain free. then I found that my tongue had white coating on it and two red circles. What's next ? I can't take anymore and I only in 10 week of this PMR. I will never make a year of this. Thanks for your reply.

[Hidden in reply to smiley67]

Hi smiley,

lets start with the white coating etc on tongue - thrush, plain and simple. It's caused by candida, a normal fungus we all carry, but when our systems can't handle sugars because of pred, it flares. Hence the white stuff. It's not dangerous, but get some meds for it if you want 'cause it looks unpleasant.

To keep it at bay, drink water after each meal and clean your teeth and tongue at least twice a day. Scrub it off, rinse and spit!

The 310 sugar level was high, but how long was it after you had eaten. Particularly carbs. Fasting blood sugars are roughly 163 to 228, but that means going about 8 hours before testing on an empty stomach.

You have type 1 diabetes I guess, therefore, your diet must be strictly controlled. That means no refined carbs so keep the skin on potatoes and rice, no added sugar and eat lots of fish and lean meat, eggs, and no pastries!!!!!!! Wholemeal everthing. Veges are great, but go easy on fruit - it's sweet, and honey. That's sweet too, so avoid.

We are back to the 'stone age' diet.

Your rheumy and GP have to tackle your diabetes and PMR. You should be getting help - not floundering about, which is stressing you right out and all that will do is cause your PMR to flare.

Don't lose hope and don't drop the steroids because your PMR is not controlled.

On a lighter note, I use Canderel sweetners, have done for years. Ignore the bad press - it's all rubish. It helps to replace sugar in tea, coffee etc.

Best wishes,

Pats.

[smiley67 in reply to Hidden]

Thanks for advice am Type 2 and what is the med for my mouth ? So your saying after insulin shot it would take 8 hours sugar to go down with a 310 sugar count ?

[polkadotcom in reply to smiley67]

It might even be easier to keep the thrush at bay by eating a live yoghourt each day? That's what I do. Must be live and preferably unsweetened.

As far as the 8 hours mentioned goes, Pats was talking about what's known here as a 'fasting test' which is sometimes used to help diagnose and treat diabetes, mainly Type 2. It means just what it says, your blood sugar levels are tested after not having food for 8 - 10 hours and the result is taken as a baseline. Not many of our T2 diabetics here are treated with insulin, meds only plus diet restrictions sometimes and the fasting tests are being gradually phased out in favour of a test which shows the sugar levels over a length of time, it's known as hbA1c which is the name of the actual test asked for on the test form.

Your sugar levels are given on a different table to ours, I will try to find a conversion list as I can't remember the equivalent straight off. I can tell you that on our table a normal reading would be between 6 - 8, so will need to work out where your 310 result comes from.

[smiley67 in reply to polkadotcom]

Thanks for your advice. Am on oral meds insulin was added because oral meds were not keeping the numbers down.insulin doesn't seem to work enighter.

[Hidden in reply to smiley67]

Hi smiley67

polkadot's advice is good, but avoid high fat yogurt. Low fat or no fat are best as they do not contain lactose (milk sugar).

She is right about the new diabetes test - it measures sugar over many weeks. No fasting required. It's taken using a blood sample. I've had it twice - the 1st one showed low level diabetes, but 3 months later my level was fine. My GP said steroids can cause the increases and he was pleased mine had reduced along with pred reductions.

Perhaps you could ask for the hbA1c test.

I had the meds for thrush a couple of years ago. Prescribed Canestan - useless!

I've seen 'apple cider vinegar' recommended too. You just rinse it round your mouth.

Are you on a strict diet for your type 2?

All the best,

Pats

[smiley67]

I had the A1C test before I got pmr and it was 6.3. The Dr didn't want to do it now because she said it would be high because of the predsisone. I guess she will wait till later to do it. I was never on a diet I always eat what I wanted and watched when my numbers started to go up. Always had good A1C 6.2. 6.3 6.6 she said I had good control till now.the predsisone is causing all my sugar problems. What mgs of predsisone are you on and for how long have you been on that dose ?

[Hidden]

Hi smiley,

In November, 2012 my brush with diabetes was steroid induced and my GP had another test done 6 months later - it was fine and he was pleased. My dose of pred had reduced and the diabetes threat was gone. I guess it depends on how elevated the results are as to whether or not meds are given for it . My positive test was 6.5 which was pre-diabetic and 'at risk'. I was on about 10mg at the time, but my doctor said many specialists don't treat steroid induced because it just goes back to normal on the low doses. I suppose it all depends on how bad it is and whether you had type 2 before steroids.

At the moment, I am on 6.5mg and feel pretty good. I have had PMR for 3 years, but have had 2 flares. I have been up to 30mg twice and both times it has taken months to get down to the low doses (under 10mg), but I feel it is counter productive to reduce quickly. Below 10mg my drops are half a mg every 3 weeks and, for me , this works.

Pats.

ps - don't feel bad about your diet. I try to keep to the good stuff, but at Christmas, I ate all the foods I shouldn't - felt like a bloated piggy, and I hate to think what my bloods would have shown then!

[smiley67]

Is it normal to feel pain after you lower your dose of prednisone. I'm at 10 mg now and feeling pain in my left thigh. I also have a torn rotator cuff in my right shoulder, which has come back quite painful. This is how it all started when I was diagnosed with PMR 10 weeks a go. I don't understand what I'm supposed to feel or not feel when you are lowering your prednisone dose ?

[Hidden in reply to smiley67]

Hi smiley,

Yes, perfectly normal. It's one of the common side effects of steroid withdrawal. Many folks use paracetmol to help them through the painful period, but that drug does not agree with me and my rheumy allows me to use ibuprofen.

Read the leaflet that comes with your meds, but remember, you won't get all of the nasties.

If you come down too quickly, the side effects are usually worse.

My PMR was, like yours, started off by an injury to my shoulder, and my last flare was caused by a rotator cuff injury to my other shoulder. Both times, the pain just spread until I could hardly move, I was so stiff.

Pats

[smiley67 in reply to Hidden]

Thanks again for your advice. How long dose the pain last ? Sorry I ask so meney questions but just like learning everything I can about pmr. Don't know what I would do without this site. We have none in the usa .

[polkadotcom in reply to smiley67]

That's just not a question any of could answer, Smiley. We are all different and we all have different responses to pain, to PMR and to steroids. I would guess that you are having some extra pain because the steroid dose is being reduced so quickly. Has your doctor said what she plans to give you once you are off the steroids?

[smiley67 in reply to polkadotcom]

what would she give me when am off pred ?

[polkadotcom in reply to smiley67]

There are some drugs for arthritis she could try you on to see if they help. None of them will help as much as steroids - nothing does - but they might possibly reduce your pain. They are called Disease Modifying Anti-Rheumatic Drugs (DMARDS for short) and there are four or five of them. I think it will probably depend on your pain levels then.

[smiley67 in reply to polkadotcom]

Can those drugs be taken with predsisone ?

[polkadotcom in reply to smiley67]

Yes they can and very often are. But make no mistake these are very toxic drugs mostly used for different cancers - chemotherapy drugs. Used for help in very severe or non-responsive cases of PMR they are known as steroid sparing agents and should not be taken unless totally necessary.

[polkadotcom]

I've been on steroids for more than 13 years now, in varying doses. I am currently on 5mg and have been at that dose for 18 months now.

I was diagnosed T2 diabetic at around the same time as the PMR together with late-onset Asthma and under-active thyroid - all in the same year. I've collected other diagnoses as I've gone along, but I really don't want that year over again.

Pats, some of the low-fat yoghourts have a lot of sugar in them.

[Hidden in reply to polkadotcom]

Hi polkadotcom,

I'm lactose intolerant so don't eat much milk-based produce, therefore not an authority on yogurt etc, but presumed that more fat means more lactose - if I ever eat clotted cream then I'm in real trouble.

I often feel a bit cheated as I'm into year 3 with PMR, but, compared to what you have been through, mine's an easy ride.

Good luck,

Pats.

[Hidden]

Hi smiley,

My way of knowing if my last drop was too much was - after 3 weeks if I was still in pain then went back to the dose that I was comfortable on and stayed there until I felt OK. I waited a few days and dropped the dose again by 1mg on the teen doses, and half a mg on the doses below 10mg - I waited at least 3 weeks for both types of reduction.

I managed to get down to 6mg late last year and was fine until I had an accident and, because my PMR flared, went up to 10mg for 3 weeks and then reduced to 9.5mg. I have been fine and on 6.5mg now. After 3 years I think my PMR is very mild, but soon I will be pushing my adrenals to wake up and help - the 5mg and below is said to be sometimes difficult - but I'm not going to worry about that now.

We are all different when it comes to the management of PMR/GCA, but once below 20mg I had to go very slowly on the drops to keep this illness under control. Sometimes I had to use the alternate day dosing method until I was on track - you just have to listen to your body and act accordingly, and no doctor can tell you what to do - only you will know.

Pats.