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Side effects predictions/experiences

Posted , 13 users are following.

paul45653
paul45653

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

2 likes, 68 replies

68 Replies

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  • EileenH
    EileenH paul45653

    Posted

    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.

    • tina-uk_cwall
      tina-uk_cwall EileenH

      Posted

      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
      Padada tina-uk_cwall

      Posted

      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.
    • EileenH
      EileenH Padada

      Posted

      Courgettes: zucchini (same as here in Italy, courgette is UK)

      Beetroot: The beetroot is the taproot portion of the beet plant, also known in North America as the table beet, garden beet, red or golden beet, or informally simply as the beet.

      The 5:2 diet, also known as the 5:2 fast diet, is a diet where on 2 days a week, not consecutive, women restrict themselves to 500 calories (men 600). The rest of the week you eat normally. Google it, you will find plenty of recipes and suggestions.

      The primary problem with obesity in the western world is actually a total misunderstanding of portion control. A portion of meat should be about the size of a pack of playing cards, approximately 4oz. You need to eat large quantities of low GI veg - and then you are full and you won't have a plummeting blood sugar level an hour later. I do occasionally feel hungry. I get a cup of tea with lemon (no sugar) and the feeling passes. Often people THINK they are hungry but they aren't, they are thirsty.

      Being hungry is not a bad thing - a great deal of the obesity epidemic is due to people thinking it is abnormal to feel slightly hungry - and stuffing themselves with "snacks" between meals to stop the feeling. Every time you eat some carbohydrate insulin is shed in the body, causing an overcorrection of the blood sugar level and pangs of hunger. So you eat again and compound the problem. Add up the calories in those snacks as well as your main meals and you will soon come up to and exceed the daily calorie requirement. It has been said it is over 2000 calories for women - that is for someone doing a physical job and exercising. Not someone sitting at a desk and driving to work. In fact a more realistic calorie allowance is 1700 calories per day or even less. Especially if you are overweight to start with when really you need less, not more.

      Next time you feel "peckish" (UK slang for a bit hungry) try drinking a glass of water, or go for a walk, or find something else to do. Half an hour later (or less) you will have forgotten you were hungry and saved probably 150 calories.

    • Padada
      Padada EileenH

      Posted

      I guessed the beetroot was probably your name for beets, but would not have  thought of zucchini.  Interesting information regarding hunger.  I did not realize most of that, especially the part about compounding the  hunger problem by eating snacks.  I will have to try your alternative suggestions.  Yes, a walk seems a good idea. 

      Eileen, you really should write a book. Actually, I think that if you just went back and put all the information that you have shared with others on this site - you already HAVE written a book.  Thank you again for your generousity. 

    • Padada
      Padada tina-uk_cwall

      Posted

      Christina, I live in the US.  In Arizona, that is in the Southwest and AZ borders Mexico.  We are desert land, but I live at 5,000 feet and we do get snow. 
    • tina-uk_cwall
      tina-uk_cwall Padada

      Posted

      Padada, sorry I didn't reply last night after asking where you lived but I was so tired come 9pm that I went to bed. This morning I see that Eileen has told you all you need to know, thanks Eileen. Hope all the info is of help.
    • paul45653
      paul45653 EileenH

      Posted

      Thanks for relating your experiences. It gives me encouragement. Im changing Rheumys soon. There is a lady one at my local clinic which saves a much longer drive. I'll try and stay at 10 for a while longer. I'm not in any great duress and can still play some tennis. My left hip problem when putting weight down is thought to be from my back where sciatic nerve exits the spine. I wanted to blame bursitis but it is not tender to touch. I'll live with it as long as I'm still upright. 

      Paul

    • EileenH
      EileenH paul45653

      Posted

      Try a Bowen therapist if it is the back. OTOH, bursitis doesn't HAVE to be tender to the touch. Mine isn't at the moment!
  • paula63201
    paula63201 paul45653

    Posted

    One other thing. Sometimes, when feeling hungry, I am actually really tired and needed to take a break and rest. A cup of tea (no sugar) or some water and putting up my feet did the trick. I generally eat mostly veggies and protein (sardines, joghurt, cheese (calcium laden stuff) and fish, meat, etc., and some very selective carbs (those I cannot resist!! My faves! fruit, bread and dark dark chocolate and some vino (bianco or rosso). Weight is stable, pain under control. As of 2 days up to 15 mg prednisone for a viral infection and ensuing ear infection and antibiotics, but back to 7.5 within a couple of days with fingers crossed.
    • lodgerUK_NE
      lodgerUK_NE paula63201

      Posted

      Keep a cucumber in the fridge wrapped in foil.

      When feeling hungry, cut one inch of it and eat it.

      You can survive in the desert with cucumbers and nothing else.  Google it.

    • Padada
      Padada paula63201

      Posted

      Paula,  I used to hate sardines, but now trying to get protein and iron into diet, I am eating them.  They are not as bad as I remember - Brunswick brand not too fishy.  My favorite carb is a sweet potato. So now I have a question :  when you say your pain is under control, what exactly do you mean?  No pain, some transient pain, pain you can tolerate?  I am trying to  what I should expect,  pain control-wise,from 15 mg of prednisone.  Eileen has given me good input.  I thought I would ask others of their experience too. But I am sure everyone is a little bit different in their response and perception of pain.  I have low pain tolerance evidently.   Mary jane
    • Padada
      Padada lodgerUK_NE

      Posted

      Hi Lodger,  that is a good reminder about cucumbers.  I like them but don't buy them because my husband is allergic to them (and to all foods that contain salicylates, poor thing)  I will google that info and I will put them back on my shopping list for me to eat,  Mary Jane
    • paula63201
      paula63201 Padada

      Posted

      Hi Padada,

      I have NO pain on 7.5 mgs and once I was put on Prednisone to begin with, it all went away after a couple of days. I had had it for 4 months or so prior to that and could barely walk, sleep, get up, sit down, lift my arms, etc.

      Now, as I did before PMR, I do 1/2 hr yoga every morning-stretching and strength poses (Iyengar style yoga) at home, before leaving for work and also use a thera band for strength training and walk about 40 minutes outside at least 4 times a week. Before I went on Prednisone, and was misdiagnosed with Fibromyalgia, I did some Easy Yoga, in a chair, in front of the TV, just lifting my arms and doing finger, arm and some leg exercises. This was from a DVD and it was very helpful, as I had already lost a lot of my muscle and couldn't raise my arms (stiff and a frozen shoulder). I also went to a warm water pool for physical therapy. I had a prescription from the first rheumy, (Although I dumped him and found a new one, as I knew I did not have Fibromyalgia and he insisted I did.)

      When I reduced to 7.5 from 8 mg, I noticed a lot of fatigue, but it also coincided with a change at work and the December holiday insanity and a virus. So who knows. I don't know how I'll feel when I reduce to 7 mg, in a couple of weeks.

      All the best,

      Paula

    • EileenH
      EileenH paula63201

      Posted

      I was discussing the 7-8mg dose return of fatigue with a consultant rheumy who does research in PMR. She thinks the same as me: this is the region of dose at which the adrenal glands have to start producing cortisol themselves again. It isn't that the adrenals aren't working, it is the complex feedback setup that governs them, the thyroid and the rest of the hormone box of tricks. It doesn't settle down right away, it swings backwards and forwards and until it has achieved the right balance you will tend to feel fatigued because the hormones are in a mess. Very small changes and sticking at each dose for a few weeks at least between reductions may be helpful.
    • paula63201
      paula63201 EileenH

      Posted

      Hi Eileen,

      Yes. I will definitely follow your advice and go really slow. I've been on 7.5 since the first week in December. Once I get back on it from this temporary 15-10-7.5, I will return to the Rheumy in mid February to discuss next reduction. She is fine with me setting my own pace, as she feels that I live in my body and would know better how it feels than she does. I'll try the 4 days old dose 1 day new for a week and then go to 3 days old 1 day new for a week, 2 days/1 day for 2 weeks until I get to the new dose, 7 mg, and stick to it for about a month. Does this sound like a reasonable plan? This would be about 2 months and I generally see the Rheumy every 2 months. I wonder if there is anything else that can be done to help the hormonal balance? I am on 0.45 Premarin, (Estrogen) also. The internist upped it from 3.0 to help protect my bones, while on Prednisone. I am considering retiring. I am 68. Not sure if quitting will add to the stress or reduce it. But that is another matter.

      On another matter. Una piccola domanda. I am planning a trip to Italy, specifically to Tuscany, once I retire, whenever that will be. I have been there before on many occasions, but this time, I will be taking some courses. I will be alone, except for the places I plan to study. I have been studying Italian, but don't want to ask the teacher and my knowledge of Italian does not include medical terminology. How do you say PMR in Italian and that one is on a specific dose of Prednisone? This just in case something medically untoward occurs. I hope you don't mind my imposing on your knowledge of Italian.

      Thank you,

      Paula

    • EileenH
      EileenH paula63201

      Posted

      I'm afraid you can't presume on my knowledge of Italian - because it is not very comprehensive! Although I live in Italy - I live right up in the north in South Tirol (the Italians call it Alto Adige), which until the end of WWI was part of Austria and the majority of the population are German speakers, despite the best efforts of the Fascists. The valley where I live is 90% German speaking with a few Ladin speakers, so very few native Italian speakers. Occasionally I find myself explaining to patients in the hospital what an Italian-speaking person is saying to them! We speak fluent German - all we need here although there are a few doctors who don't fulfill the requirements of being bilingual - this is a fully autonomous region and all medical staff must speak both languages by law. I can do being ill in German - I translated German to English for a living and my favourite field was medical sciences! 

      However, it is "polimialgia reumatica" - not a world shattering difference! There are companies who will make a card to carry with you in specific languages explaining medical conditions. The MedicAlert bracelets system also keeps your records with all the information required about conditions, medication and contacts at a central multi-lingual call centre. Carry a clearly written prescription with you with details of all your medication and doses - it won't work for dispensing in Italy but it will provide the info they need.

      Many doctors do speak some English, especially younger ones who have done it at school, many attend international meetings where the work language is English. 

      Lucky you - what a nice doctor! Shame more aren't like that. Your approach to reduction sounds good - but be prepared to adapt if necessary. It is all a bit experiemental to some extent.

      And retirement? I can recommend it - not that we are totally retired, my husband still does some consultancy and if I'm asked to translate something I do it as well as doing editing of the Proceedings of an international meeting together with him. But we will never get a better boss!! ;-)

    • paula63201
      paula63201 EileenH

      Posted

      Hi Eileen,

      Thank you. Good to know what it's called in Italian and also about the Medic Alert bracelet. I did not know it was international.

      I have been through and to Alto Adige, as I traveled through the Brenner Pass on many trips to and from Italy from Munich as a girl in the 50s and 60s. My parents loved Italy. We also spent time near Merano. I grew up in Munich and also went to Uni there. One of my friends there had a famiy home near the Austrian border in Alto Adige and I stayed there and went hiking. It was very beautiful. 

      I have a huge list of 'things to do when I retire.' Yes, might be time to focus on that list, and be one's own boss!!

      Cheers!

      Paula

    • EileenH
      EileenH paula63201

      Posted

      Do you remember where they lived? It's probably close to me! It takes maybe half an hour to Austria in one direction and an hour over the Brenner.
    • paula63201
      paula63201 EileenH

      Posted

      Hi Eileen,

      I don't. The house was a big manor house. It was years ago-1967 or 68.

      Paula

    • EileenH
      EileenH paula63201

      Posted

      That was a really interesting time here! "Freedom fighters" were blowing things up (electric pylons, no people) then and through the 70s. It is all much more peaceful now. You would see so many changes - you must come and visit soon.
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