Im now into about 8th month at around 10mg, despite instructions and warnings from Rheumy. I'll stay as long as it takes but I'd like to know at what dosage and how long it takes for some of the side effects to leave. I'm speaking about things such as memory problems, tremor, purpura, balance loss, etc. I'm sure I won't see any improvement at 10, but it would be nice to look forward to loosing some of the worst when I can get my dose smaller.
Paul
Paul, you mention your side effects but not how you are doing symptom-wise.
Eight months at one dose without trying a reduction is a very long time (unless, of course, you have been following the Bristol protocol from the start). With those side effects you are experiencing, and if you are symptom-free, if it were me I would be attempting a reduction in dose, even if it is only a very small one.
As for how long it will take for those side effects to leave, depends on the individual. Certainly, I only experienced most of those problems whilst on the high steroid doses (I started at 40mgs for PMR and GCA), although my balance problems remained a little dodgy throughout, finally resolved with Tai Chi classes.
If those side effects are severe, I would be inclined to heed your rheumy's warnings.
Hi Paul. How are you pain-wise? Do you feel as if you might be able to reduce? I found that below 10 mgs I lost my big appetite and insomnia side effects, but I haven't lost any of my weight gain even though I've been at 5mgs for six months. I haven't had any of your side effects though, and would be tempted to be guided by my doctor if I were you. Angela
Yes paul, I'm not medically trained but I would be inclined to say that the side effects you are speaking of are from the preds and not the PMR. I stayed on 10 mgs for 6 months but luckily for me I have no side effects other than anxiety, which I have never had before.
as Mrs o has said if your PMR symtoms have gone and you have not experienced them for at least 6 weeks I also would be inclined to start reducing, perhaps, 1 day 10 mgs the next day 9 mgs and stay on that dose for 6 weeks and then if you are well there then go onto 9 mgs for 6 weeks. But as I say I'm not medically qualified. Christina
Hi Angela was just reading your post. Unlike yourself my appetite stayed the way it was. Having said that I have put 7lb on. I think that was very little mobility and copious amounts of chocolate. Have you tried to lose weight? I joined a slimming club 2 weeks ago and my first week I lost nothing even though I followed the plan.
Hello oat and Angela, to change the subject from the thread for just 1 minute. When I was diagnosed with PMR I was already approx 3 stone overweight, an amount put on over the last 4 years. I have been on preds for just over a year now and although I was warned about increase of hunger and therefore in increase in weight, I have never suffered from this side effect, and I'm still on 10 mgs.
last week as part of my New Years resolution I started a diet. It's not a recognised diet but I attempt to reduce my carbs and eat more anti inflammatory foods as well as reduce my general food intake. I have lost 5 lbs. I know that the first week if a diet is always the easiest and most people lose the most weight then but I'm really optimistic that I wiil succeed. Christina
sorry oat I meant pat!
I haven't tried dieting Pat, but will consider it when it gets a bit warmer. I gained another two pounds around Christmas time, but I'm five foot three and now nine stone two pounds which I don't think is too bad. I was eight stone five pounds before. The funny thing is my trousers still fit, and I think the weight might be mostly on my upper half where I was previously very skinny. Even so, I hate the fact I'm gaining weight. Like everyone else, I'd love to get off the Pred. I'm not surprised you lost no weight on the diet plan though. Normally if I put a couple of pounds on when on a holiday (as I did in December) it would drop off once I got home and ate normally, but not any more. It stays there and refuses to budge! Angela.
Thank Christina. I think cutting carbs is a great idea and I'd love to give it a try. Watch this space
Hello Christina, is there a 'recognized' anti inflammatory diet that helps PMR? I would like to know which foods are considered anti inlammatory. Also, are there any recommended natural anti inflammatory remedies that can be taken along with the prednisone. I am thinking of curcumin, boswellia, cod liver oil etc. Or should one rely on the pred. to reduce inflammation. thank you
Hello Padada, I simply googled anti inflammatory diet and pages and pages came up. I eat lots of almonds, we'll all nuts oily fish, beetroot, dark leafy greens, tofu, low fat diary, peppers- green, red and yellow, I made a fabulous ratatouille, tomatoes, ginger, turmeric, garlic, onions, olive oil, blueberries, strawberries, raspberries, tart cherries, although I've not eaten any of them yet, there must be more but they're the ones that I'm using presently.
When it comes to anti inflammatory 'natural' remedies, just take care that they can be taken with your prescribed drugs, always check. Now wether these foods will work I have no idea but at the very least they are all foods that are good for you and they are recommended by the arthritis society for rheumatoid arthritis, which I know we haven't got but we nevertheless do have an inflammatory condition. Christina
I suffered loss of balance - and it was definitely the PMR! How do I know? It happened while I was NOT on any pred! I also put on weight with the PMR because I was less active and also craved carbs in the afternoons. I didn't know WHAT I wanted, just preferably something sweet - and that is something that is absolutely NOT me. As soon as I started taking pred that craving disappeared, overnight. With the first sort of pred I didn't put on MORE weight, it just redistributed to upper body and back of my neck - the places pred causes fat deposition. With Medrol I put on a lot of weight. And with the current version of pred I have steadily lost weight over the last 2+ years, now 37lbs altogether.I have another 8-10lbs to go. I have worked hard at it as well mind you - as long as I eat almost no carbs I lose weight, though not fast. Eat more than a small amount of carbs and I stay the same weight. I kick started the weight loss by using the 5:2 diet concept, and what that did more than anything else was teach me far better portion control and reduce my appetite. Once you have had a few weeks with the 2 "fast" days you are no longer so hungry on the other days and are perfectly happy with less. I'm by no means the only person to have experienced that. Five days a week you don't have to panic about what you eat - for 2 days you learn to create a good filling meal with few calories and it is easy to follow. Another lady lost a similar amount of weight
You obviously have a panic stricken rheumy Paul - you need what you need and going to a lower dose that lets the symptoms back would be pointless. I was probably at above 10mg for at least 3 of the last 5 years, probably longer. I haven't self-destructed, I have no diabetes, raised cholesterol (now) osteoporosis or any other severe side effects. Your other problems depend on the person. My memory is better now at 4mg than it was at 10mg, but it was improving by then. The purpura weren't bad but they have no stopped appearing, probably since about 7mg.
Angela - I'm 5'1" and if I were to get to 9st 2lbs I'd be in heaven! It isn't going to happen - even a dietician told me once not to try to get below well over 10st. At 5'3" and 9st 2lbs your BMI is very definitely in the healthy weight band. I appreciate you are used to being less but being very slim is not necessarily healthier in some respects.
Eileen, with this new lower carb and anti inflammatory diet that I've started I also have introduced the 5:2 diet albeit not on such a strict regime but I have definately done that once so far. Prior to my PMR symtoms I was actually on the 5:2 diet and had lost about 6 pounds then as the immobility kicked it I put the weight back on again. Like you I found it a very easy to follow diet and regime. Christina
Padada, like Christina, I researched anti-inflammatory foods and stuck to as many of them as possible throughout my time on steroids. I gained around 5lbs in weight on my starting dose of 40mg Pred.
I ate plenty of oily fish (sardines (with bones - good for our bones), mackerel, salmon and trout, beetroot, avocado, garlic and turmeric (the spice, added to suitable meals such as casseroles, risottos, etc. Diuretic foods can help to avoid steroid-induced fluid retention - asparagus, garlic, fennel, melon.
Foods to avoid are refined carbs which can increase steroid-induced weight gain, for instance white potatoes and parsnips which turn to sugar in our bodies and could add to the risk of steroid-induced diabetes. Avoid all processed foods.
Coffee, sugar and alcohol can stress the adrenal glands which are already being suppressed by the steroids, so avoiding them can help.
Of course, none of these foods will cure us, nothing does at present, but I did find that if I missed out on my usual few portions of oily fish a week I would notice worsening symptoms.
We had an NHS dietitian giving a talk at one of our PMR support group meetings, and gained lots of helpful advice from her, the best being that dark chocolate is anti-inflammatory!
Thanks Christina, if I don't lose weight this week at the slimming club then I am going to reduce my carbs and go for protein and veg. All in all I would need about 2 stone off. At the same slimming club I lost 21lbs (in two and a half years) how I did not throw the head up I will never know. I don't have much of an appetite and people say aren't you lucky. Not so I'm afraid, I find it more difficult.
You have told the slimming club you are on pred haven't you? It DOES make a difference and they may need to take it into consideration.
I went to a club (Rosemary Conley) a long time ago and lost some weight, but the final "aim" was set far too low and I continued paying full wack and never had any chance to getting to my target weight and lower rates. Plus I could go to any available classes - but the nearest other one was 10 miles. Had I been able to go to a few for the exercise class I wouldn't have minded so much. It did provide a low impact class that got me into exercise though - so it wasn't all bad, just the charges added up!
Pat, there is a diet called the green and red diet that is based on protein and veg. My friend is doing it with great success. Basically you cannot have any meat (red) on the same day as vegetables (green). So it's very easy to implement. I think what I'll do is post on the forum my monthly weight loss, maybe if I've had a good month that might inspire others who are dieting. In total I have yo lose 3 stone. Christina
Thanks Angela, I was at the slimming club long before PMR and still found it difficult to lose weight. I am 5ft 4in in height, I look taller because I have long legs. I am two and a half stone overweight and will never give up trying to lose it. It is a very slow process for me and it has been going on for about 10 years or more. Having been to Endocrinology, went private and then had a gp referral to my local gym and was assigned a personal trainer who worked with me. I was burning about 560cals an hour. In the end she asked could she get in touch with my gp and this was not normal. I had to fill in a food diary every week for 12 weeks, she put me through my paces alright but only lost about 7lb. I was grateful that at least someone else could see what was happening and it wasn't just in my head. Was referred back to Endo, every blood test carried out, cortisol level, thyroid and everything was normal. It can be so frustrating. Oh and now pred that I am taking but sure God loves a tryer.
I've steadily lost about 2lbs a month. That may sound very poor given the amount of weight I had to lose originally but my GP is delighted with it!
You have to remember that you are on pred which changes your metabolism so slow isn't surprising and you shouldn't get disillusioned. Losing it slowly also means a minimum of wrinkly skin - and it is more likely to be fat that goes.
My diet is protein and veg but not complicated by "can I have it today?". Very little bread, pasta, rice, potatoes or other root veg besides carrots (not more than a couple of ounces of any one on a day, not 2oz of each!). Meat portions the size of a pack of playing cards and unlimited green leafy and other vegs (courgettes etc), salad stuff (dressed with oil and vinegar and dried herbs) to fill up.
Using the 5:2 combined with this means dining out isn't a problem - and you don't deprive yourself ever. If I want a dessert - I have it. Just not every day. But I do eat a square of high quality chocolate every day...
May I ask what is the 5:2 diet? Also, what are courgettes and beetroot? And I wonder how Eileen keeps from being hungry with a small portion of meat and mostly veggies and greens? Without some carbs (sweet potato or beans) I feel hungry. Thenk I might have a rice cracker with a dash of peanut butter to squelch the rumbling. I don't eat wheat or dairy or sweets d/t some allergies. It seems that vegetables, fruits and some spices offer the most anti inflammatory effects diet-wise.