Good Morning, insomnia kicking in! I've been on Pred for nearly a month and I'm sure I'm anaemic, has anyone suffered the same? I'v put my lack of energy and tiredness and fussy head down to the pred or PMR itself, but the colour of my skin is so pale and when I pull my eye lids they are pink not red!! Any other problem by the looks of it! So fed up with this and it's only been 2 months of PMR, I WISH I COULD SLEEP FOR A FEW YEARS UNTIL ITS GONE,
I understand that B-12 sublingual could be beneficial for the symptoms you describe. The internet can give you information about B-12. You could check with your GP about it also. I have used it, and it has helped me.
Last part of paragraph! Not heard that one on this forum yet. What a thought? How old are you? A "few years" would be rather risky I fear!!!!
Unfortunately your journey is just beginning, but take heart, some sufferers of PMR don't have too bad a time of it.
Have you asked your Dr about anaemia? He, of course, should be your first call.
When I reduced my Preds too quickly I was so tired I spent a week in bed. Never done that in my whole life !
it helped a lot because I did a lot of research and found so many reasons for tiredness and pain. I changed everything after that and especially my diet. Green vegetable powder mixed with juice every evening helps me sleep well. That is the first problem to address. There are a number of vitamins and minerals that go awol especially if you have also been prescribed stomach acid reduction tablets. I found magnesium, zinc and B12 were very low also calcium was up the creek but Doc prescribed Fultium D3 gel capsuls as the chalky ones made me very sick. I have adjusted my diet considerably and added a great deal more green vegetables which have definitely made an improvement.
Hi Andrea, welcome. Pre diagnosis, actually it should have been your very first blood test, even before CRP /ESR blood test your Dr should have tested for anaemia. I was slightly anaemic and that problem has normalised by taking just 14mgs of iron daily. All the best, christina
Thank you erika for your reply!
thank you Constance! I'm on the doctors case!
forgot to say Constance I'm only just 50 years old with a 12 year old son. My life is busy, with a job so I need to be active but unfortunately my life will be on hold for how ever long it takes!
thanks Christine! I've upped my dark greens over the Last month, but have been run down for a few months prior to diagnosis, so I bet my reserves were low to start with.
thank you Christina! Will phone my GP today!
Your can get super green vegetable powder from Amazon and it works very quickly, especially if you have sleep problems !
Hi Andreas , have been diagnosed 5 months now , felt better to start with , this last couple of weeks freel absolutely done in .
Asked the group, who are certainly a great help , and the fatigue it appears can happen any time , I am sorry to say . I go between looking pale and really quite rosey , do speak to your doctor befor taking large amounts of the vit B 12 only I think it is one of the vitamins you can overdose on and it can upset the system .
I trying to put a few things together for a couple days a way and I feel I am packing for the English rugby. Team . It appears that a lot of the friends on this roundabout go up and down with energy and from what I understand is that you have to pace yourself , accept that this is the way of PMR and don't over do it on the good day , and you will get there in the end . Good luck , and do explain to your son how you are feeling.
Something that is often commented about in the medical literature is the "unwell appearance" of the PMR patient.
I do remember that in the days of pre-pred PMR we were on our way on holiday and stopped in Leeds for my husband to give a lecture. I went shopping (as you do) and ended up in Harvey Nicks - a department store with the usual cosmetics section immediately inside the door. I stopped to look around, something I would never normally do, and was captured by one of the ladies who was doing demos. She "did" my face - and I spent over £100 on make-up in the hope it would make me look less "ill". I haven't spent that in the whole of the rest of my life!!
I was as white as a sheet - but my haemoglobin hasn't been under about 16 for years as I spent/spend much of my time living at altitude which increases your level. So the being pale is more likely to be the PMR, it may not be anaemia although a mild anaemia is common in many autoimmune disorders and is soemthing the GP should have checked for when he did the other blood tests to rule out other nasties before making the dx of PMR. The tiredness and lack of energy are typical of PMR, it is the underlying autoimmune part and that isn't changed at all by the pred but it can cause tiredness too. The fussy head can be either PMR or pred as well.
But check with the practice as to whether they did what is called a "full blood count" with the other blood tests. If they did ask for the result. If they didn't, ask for it to be done.
When querying my diagnosis of PMR one of the factors the consultants always brought up was the "slight anaemia" in my initial blood tests. I think the reason they honed in on this - without actually treating it - was that it can be indicative of rheumatoid arthritis. But yes, you should certainly have been tested right at the beginning so I would have thought the doctor would have drawn attention to any significant anaemia
It can be indicative of ANY autoimmune disorder and a load of other things. Some diagnostic criteria for PMR list "mild anaemia" and "depressive mood" - but many GPs still tend to ignore that and home in on the "depression" as the answer for us feeling mouldy!
Andrea, I was found to be anaemic during my first undiagnosed year with PMR. The problem resolved as the illness spontaneously resolved.
However, I have recently heard of a case where an elderly lady was diagnosed with PMR but the steroids failed to make any difference to her symptoms at any dose, but because her ESR improve, the medic was satsfied with the diagnosis. Some time later another Dr investigated her case, found that although a number of tests had been performed, the missing test was for Vitamin B12. On testing, this was found to be low so treatment with Vit B12 replacement injections was started, which led to complete withdrawal of steroids over a couple of weeks. She was completely well within less than a couple of months. Insted of PMR she had in fact been suffering from B12 deficiency of pernicious anaemia.
So even if you do definitely have PMR, you would still be wise to ask for a Vitamin B12 blood test. At the same time, ask them to check your Vitamin D levels as well - any deficiency can cause pain in similar areas to those of PMR.
Unfortunately, fatigue is part and parcel of having inflammation in your body and the steroids add to the problem. Hopefully, you are taking them as early in the day as possible, and avoiding as much coffee as possible, especially later in the day.
All patients are legally entitled to receive a print-out of their blood test results. There are a number of routine blood tests which should be done if a patient is taking prednisolone, including glucose as diabetes can cause tiredness too, or there can be a combination of factors which might not flag up on blood test results which a doctor might overlook. When you get the blood test printout, it is easy to find out what the up shot might be of higher or lower than average values.
Hi Christine, where do you buy Green Vegetable powder mix from, and can you take with anything else beside fruit juice. Thanks Margaret
I looked like a ghost when first diagnosed. My sister came into my bedroom one morning and she thought I was dead! Did you have blood tests checking initially? After a few weeks of pred I got a bit of colour back again. Also I found pred gave me insomnia initially but that did improve as I reduced. I used to lie in bed and was still awake when the birds started to sing. I know how you feel about PMR, I am fed up with the experience and need a new one.
This is interesting and it could very well be the missing link. A friend of mine, who is a retired nurse, told me that she uses 5000 mcg of B-12 daily for tingling (nerve damage) in her hands and feet which has helped her. She does not have PMR.
She advised me to give it a try because I tend to have a flare with being even on 20 mg of prednisone and trying to reduce by 2 1/2, It was a puzzle to me. I was always anemic when younger and had to take iron pills.
I will try to avoid sugar, wheat and red meat. Hope, this will help.
I am going to reduce by 1 mg a month from now on.when on 20 --- I am still on 30 mg for a few days because of the extreme flare...... then 25 1/2 for a week as of my GP's prescription. I do not sleep well at night being on 30. It is still high but I am feeling better.
Thanks for your input, Mrs. O. Erika