Struggling a bit with side effects! Need to get b... - PMRGCAuk

PMRGCAuk
11,266 members20,518 posts

Struggling a bit with side effects! Need to get better control over this monstrous condition!

vnett
vnett

It’s been a long time since I posted anything but I read the forum daily and it always helps. I got off to a great start with my rheumatologist and she is still so wonderful and cooperative with me. She finds me to be very sensitive to prednisone and have a multitude of side effects(insomnia, horrific sweats, breathlessness, hair loss, weight gain of 17 pounds, dry everything and of course the fatigue). So I am diligently reducing though slowly, no more than 10%. I’ve gone from 20 mg in February to 12.5 currently but have bumped it back up for a few days this week! Pain increased markedly recently. So my slow tapering is a struggle even though my inflammation markers are in normal range. And now due to some newer symptoms(eye pain, reduced pulse in one temple, some new blurry vision, occasional low grade fever and persistent headaches) she wants me to have a temporal artery biopsy after having an inconclusive ultrasound. That’s the update and little to be done but continue on since I do believe we are doing things the right way. In an effort to try to take some control over this thing I want to try harder to stop the weight gain and reverse it as well! So finally, here’s my question.......does anyone practice the Keto diet? If so can you offer positive or negative feelings about it. I’ve started researching it for the diet part but also to maybe correct the other prednisone side effects of consistently elevated blood sugar(I am very close to being labeled diabetic) and rising cholesterol and triglycerides. The diet seems challenging but doable if I really set my mind to it. I tried, unsuccessfully, to embrace the 5:2 diet often recommended on the forum. Thanks in advance for any and all input! I apologize for not being more active on the forum these past months. Too many things and an embarrassing bout of depression and self pity got in my way!

53 Replies
oldestnewest

Hi, I was diagnosed type 2 at the start of my pred journey and went on the low carb high fat diet. This keeps my blood sugars down and my cholesterol good. I was put on medication for the type 2 and taken off it. 6 months later as I am now in remission. I also lost about 3 stone. Good luck

vnett
vnett
in reply to Koalajane

Well done! Your success is encouraging to me and I’m definitely going to give the low carb/sugar, high fat diet a good try! I’m also alway happy when I see that wonderful word “remission “. Happy for you!

I haven't been on the keto diet, but know someone who is. She was (& still is) obese, & had type 2 diabetes controlled with pills. On the keto diet she has reversed the diabetes & her blood sugar is now in the normal range.

vnett
vnett
in reply to Janstr

It’s nice to read about another success story. What started out as a bit of vanity over the weight gain quickly turned to my bigger concerns. I will be thrilled if I’m able to stop the slide into diabetes. I lost a daughter to diabetes and my mother suffered for years with it and succumbed to it 18 months ago. It looms large! Thanks for sharing!

Janstr
Janstr
in reply to vnett

My husband was also diagnosed with type 2 diabetes, & reversed it by being on a low carb diet. He lost around 13kg on this diet. It's not as restrictive as the keto diet. Very sorry to learn about your daughter & mother.

vnett
vnett
in reply to Janstr

Thank you so much.

Hello, those symptoms bring back memories. I don’t think they’re unusual. However, I do worry about the fever and sweats and head problems may indicate GCA. I cannot see why a biopsy will be any more useful if your ultrasound is negative which allows more artery to be surveyed than just a random cm’s worth. You have also been on Pred too long for it to be worth I would have thought. It is a very invasive procedure and I would want to know that it is more than just a, “we may as well”. In my opinion you should have been bumped up to a much higher dose to see if the symptoms go rather than risk your eyesight faffing about with tests that may well be negative.

As for diet, I didn’t put on any weight in 18 months starting on 60mg and kept a normal blood sugar cutting out carbs. I still ate carrots but no potatoes, pasta, rice or anything with any type of flour in it. I didn’t go high fat or dairy because I can’t but ate lots of protein. I ate for England too, it was great.

Others who are more expert will reply, hang on.

vnett
vnett
in reply to SnazzyD

Thank you for your reply. You accurately spoke to my concerns about the biopsy. I too wonder what they could possibly find after my months on prednisone and the negative ultrasound results. I will be discussing it further with my doctor before having it done. I will ask about the increased dosage as a test for the eye/headache and fever symptoms and have scheduled an appointment with my eye doctor. She’s aware of the GCA concern. As for the diet query, I do believe the low carb approach make s good sense and will give it a go! Thanks again!

I was pre-diabetic...doctor rang in March (I think) said cut out sugar...so looked up things and realised carbs turn to sugar (white ones especially) so while cutting out known sugar, tried cutting about 80% carbs....I do like rice so halved the portion.....have lost a stone (by June) rheumy was amazed, asked about it, to which I replied well I didn`t go on a treadmill! doctor was also surprised.........why I don`t know......but sadly have to admit....I don`t feel any better for it!....Good luck, it`s not as hard as you think when it`s for your health.....

vnett
vnett
in reply to Longtimer

You are so right about it being easier if for your health! Sorry you don’t feel better but am encouraged by your success with cutting carb/sugars. I don’t care for the treadmill either! Ha!

I’ll give it a go and hope that my Italian husband can manage with a little less pasta and risottos ..

Longtimer
Longtimer
in reply to vnett

I did have about one portion of pasta a week, no bread...didn't change husbands diet at all......have eaten lots of different salad s for lunch, in fact I'm fed up chopping the ingredients!.....

When trying to lose weight years ago......very tough, but feeling so ill sometimes, tried to avoid added complication of diabetes if it was possible....

Good luck....keep us posted.....

vnett
vnett
in reply to Longtimer

It sounds like you definitely take very sensible approach without having to deal with denying yourself all the time! I like that and my husband will be happy about that too! I know what you mean about all the prep time required to eat right! It takes up quite a bit of the limited energy we all have. I do hope you feel better now and in the future. Thanks again!

I’m tired of chopping those salads too. Taken to doing smoothies at work. Bring my own. Spinach yogurt chia seeds almond milk. May add fruit.

Sounds good to me!😀

vnett
vnett
in reply to ConventCassie

Smoothie sounds delicious!

Janstr
Janstr
in reply to vnett

Cauliflower is wonderful on a low carb diet, as its low GI & low calory & you can process it into rice size pieces & then use it as you would rice. It loses its cauliflower taste & absorbs the flavours of sauces. You can also mash it & use instead of potato. I can imagine what your Italian husband will think of a cauliflower based risotto

vnett
vnett
in reply to Janstr

Thanks for that tip. We love cauliflower and I’m going to give it a try today. I think I’m going to use it as a replacement for rice and grain salads.....my husband loves trying new things but don’t alter his risotto!!. He’s actually very curious about this new approach to eating and sweetly told me that he needs to lose a few pounds too.

We live in Chicago and he knows he can always slip out to our local Italian restaurant for his pasta and risotto fix though!!

PMRpro
PMRproAmbassador
in reply to vnett

Get a spiraliser and make veg "spaghetti" - he can have his pasta while you have the sauce on courgette spirals.

This just one to show you what you could do

thewirecutter.com/reviews/b...

My daughter uses one - the lady who doesn't like veg...

I make lasagne in 2 portion-sized dishes with thinly sliced courgette for me in one and pasta for him in the other. That takes longer than my usual approach of chopping veg into bite sized chunks and drowning them in herbs and olive oil before roasting for 1/2 hour - and if I want fish, I just invert a filet of salmon or sea bream (orata) on top for the last 20 mins or so.

It doesn't have to take a lot of time - I make 500g of hamburger/minced beef into sauce (with lots of tomato) and freeze it in portioned sizes in tubs. It really does take the same effort as for 150g - the rest is "free".

vnett
vnett
in reply to PMRpro

Wonderful suggestions and it sounds delicious! It will also lessen any guilty feelings about neglecting my husband, not that he’d ever complain! At his age he is very set in his ways regarding favorite foods! Thanks so much!!!

PMRpro
PMRproAmbassador
in reply to vnett

Haha - my husband was set in his ways about 25 years ago!! To be fair it was post chemotherapy and his sense of taste had changed a lot. However, he discovered a year or so ago that he does in fact like aubergine/eggplant! So I have another dish we both eat: moussaka! I make it with a low carb topping: an egg beaten into Total greek yogurt. Dead easy, no cooking of a sauce and yummy :-)

vnett
vnett
in reply to PMRpro

Yum! I’ve always thought that a bit of change throughout our lives keeps us young and open minded!! With our partners in life it’s all in our approach and in this case a bit of necessity! I love to cook but had been feeling a bit discouraged lately. Thanks for the ideas and the perking up it’s given me. I’m feeling the urge to get back into the kitchen again! As always you are a wealth of information!☺️

Janstr
Janstr
in reply to vnett

There is a very good recipe book we used called The 8 week Blood Sugar Diet Recipe Book by Dr Clare Bailey

PMRpro
PMRproAmbassador
in reply to Janstr

The trouble with recipes is I now lose interest if there are more than about 5 ingredients - especially if I would have to go out and buy more than a couple! This is from someone whose primary hobby was cooking...

vnett
vnett
in reply to PMRpro

I agree! My hobbies have always been cooking and painting, both of which have been greatly impacted by PMR. So I look for easier ways and for both to be be less time consuming and labor intensive. The fatigue has demanded that!

You make me feel so good! I’m with fewer ingredients & what’s in the pantry. Eg Pioppi diet. I have to adapt those according to their shopping list. I never had the cooking hobby thing going so I’m struggling, but apparently not alone. Also, ala plant based I’ve learned not to mind having the same thing over & over. Easier all around.

vnett
vnett
in reply to Janstr

I will take a look at it. My library does have it on hand. I find that I have been finding countless low carb recipes on Pinterest. My “to try” list is getting quite long. I’m treating this as just continuing on in my love of cooking but with a more healthy approach and for good reasons!

DorsetLady
DorsetLadyPMRGCAuk volunteer

As SnazzyD says most of the symptoms sound normal - apart from the head/eye problems. Think they need further investigation, but doubt if a biopsy will be if much use as you’ve already been on Pred some time.

It is disheartening to put on weight, but like the others if you think seriously about refined carbs and making portions smaller you will probably achieve as much as going on “a diet”. The diabetic dietician used to say to my late hubby, you don’t need to go on a diet you just need to eat sensibly- and that means the right foods, right size! With an occasional treat to keep morale up!

vnett
vnett
in reply to DorsetLady

That’s so true about eating wisely and yet not denying yourself all treats! Our morale issues are often just as important as the physical ones.

I will give more thought to my grocery shopping and portions and just try to be sensible about my approach rather than taking on a drastic “diet”. I will also have further discussion with my doctor before a biopsy is scheduled I’m fortunate in that she is a very good listener and allows for my full input on all matters. Thank you!

PMRpro
PMRproAmbassador

Loads of us eat very low carb and find it has helped avoid weight gain and in my case I lost 38lbs originally. Not sure many do true keto but it is probably even better. I have gained a small amount of weight back on - some is since I was put on a new generation anticoagulant and I just tried 4 weeks of methotrexate and that ALSO resulted in 1kg weight gain! I'm not amused!

If it is any consolation - I suffered all those side effects before I ever went on to pred, all due to PMR. I had had it for 5 years so had had plenty of time to work it out! I gained weight because I was inactive, I had sweats and fatigue and my hair was all over the place. Being ill can affect your hair badly and it often doesn't show for a few months - so sometimes coincides with starting pred.

vnett
vnett
in reply to PMRpro

Well I’m in good company with all my side effects. How did you ever cope for so long pre prednisone? You definitely had the time,unfortunately, to acquire you vast knowledge of PMR/GCA. I’m actually starting the low carb and sugar approach as soon as I go to the grocery store for some new pantry items replacing the pasta, rice and grains! My Italian husband will go into panic mode as we shop! But you encourage me with the weight loss you experienced. You mentioned methotrexate. My doctor did mention it to me and I did resist. I wouldn’t like new side effects from it! Thanks for the heads up on that one too! As always thank you for your sharing the wisdom of your experience!

PMRpro
PMRproAmbassador
in reply to vnett

How did I cope? There was no choice - so I had to get on with it. It resulted in a lot of lifestyle adjustments (and a lovely kitchen...). We had a house with 3 toilets so I never had to go far or deal with stairs just for that! If I wanted to go somewhere I could go if I could drive and not have to walk far. I went to the gym every day Mon-Fri and did an aquafit class which meant I could move afterwards and even do heavily adapted Pilates and yoga. So when we moved to a smaller house with 1 loo and I was stopped driving for a totally wrong diagnosis things imploded rather! That was when I got into research mode and worked out for myself what it probably was and presented it to the GP. When I finally got 15mg of pred I had a miracle in under 6 hours...

vnett
vnett
in reply to PMRpro

I sense that you have an inner strength to be envied and that helped you get on with it! I,fortunately, had the benefit of finding you with your expertise and this forum along with my daughter(she researched and diagnosed before I saw doctor)to help me from the beginning. I’m ready to “get on with it” too now that I’ve had my pity fest. I do believe I succumbed to the depression as I faced the loss of both parents in a short time and then realized that stressful time probably triggered the onset of PMR. I’m moving on now and seeking that same coping skill that’s the result of having no choice. Like you I experienced the prednisone miracle in a very few hours of starting it!it will all pass in time!

karools16
karools16
in reply to PMRpro

Gosh, relieved to hear that Pred can cause hair probs. Was about to fire my hairdresser. Recently paid a fair bit to replace the grey with brown colour. Plenty of time to go grey, and had had enough after 2 years grey.At present am struggling with hair once washed. Doesn't go right, left, back, on short hair.Never have been one to 'do' my hair. Envious of those who manage their locks so well!

vnett
vnett
in reply to karools16

I keep cutting mine shorter and shorter just so it looks like it’s all on purpose! Thank goodness for hair gel!

PMRpro
PMRproAmbassador
in reply to karools16

I've been grey for over 30 years - from 30 to 40 I coloured it but after that the roots were through so quickly I couldn't bear it. And decided au naturelle was the way to go. It saves a fortune! Now I look like a white blond during the summer as it colours a little bit.

karools16
karools16
in reply to PMRpro

Yes, it is expensive. Hope I don't have to go back to grey because of cost. I have coloured my hair since I was sent home from school. aged 17.For my 60th birthday, I went blonde to know what a blonde felt like.No ditziness!

PMRCanada
PMRCanada
in reply to karools16

I come from a hairdressing family, so I get my hair colour at wholesale cost (about $80. Canadian), and it lasts about 2 years. My daughter helps apply the colour, so I only pay a hairdresser for cuts (as my family lives in another province, so they can’t cut it for me). I considered letting it grow out and going “au natural” (grey), but I’m not sure I’m ready for that (I’m 56 years old). Good for you PMRpro!

Reading all the posts about hair falling out and changes is kind of scary, but I’d take that side effect over others such as diabetes, etc. Either way I empathize with all of you who are struggling with hair challenges.

PMRpro
PMRproAmbassador
in reply to PMRCanada

I coloured it as long as we lived in Germany - the girls' best friends father was a very good hairdresser and did it as a homer in the evenings, they lived just round the corner. Then we moved back to the UK, to a piddly little village. A neighbour did hairdressing from home and she was actually not bad - but even her doing my roots cost a fortune! And I could see them after a week. It is the only thing I can't bear - my hair not being right! I found a good guy in the next village until he retired and then found someone in Fife - and I went to her even after we moved to the north of England! 4+ hours drive to a hairdresser was a bit much though - and then she moved to Nigeria! My guy in the north was brilliant but here is a nightmare...

piglette
piglette
in reply to PMRCanada

Hair colour lasting two years! Amazing. My hair would have grown out totally in that time.

PMRpro
PMRproAmbassador
in reply to piglette

The contents of the bottle!!!!!!!!!! ;-)

PMRCanada
PMRCanada
in reply to piglette

Just to clarify, the $80 I pay for hair colour products makes enough applications to last two years (about 15 applications over 2 years). We apply colour about every 6 weeks, but even then not too noticeable with white roots growing out into blonde hair).

Do you have issues with a very dry nose? That is what has been plaguing me lately.

vnett
vnett
in reply to bunnymom

Yes I do have dry nose as well as eyes,skin and scalp. I use saline spray every morning and prior to bedtime and it does seem to help. Give it a try and hopefully you will find some relief as well!

bunnymom
bunnymom
in reply to vnett

Saline spray just wasn't enough and I've now gone to Vaseline which Dr recommended.much better

vnett
vnett
in reply to bunnymom

I’ll give that a try. Thanks for that info!

Your challenges sound par for the course with us PMR sufferers. I hope you get some relief soon.

Sometimes it’s difficult to determine whether the weight gain, mood swings, and dry hair/skin is from menopause, PMR, or pred??? Are the aches and pains from PMR or withdrawal from pred. If your markers change (one of mine does), that helps solve the puzzle.

I began a low carb, low salt, low sugar diet in April to combat high blood pressure and lose weight as I have chronic knee injuries that (likely) require surgery. I have lost 21lbs since then thanks in part to my daughter who is a nutritionist and made me some meal plans. I also try and swim/aqua size three times per week and take slow, steady walks. I’m hoping to lose 20 more pounds but have been on pred since May 1 so feel like the weight loss is slowing down, but determined this is a lifestyle change for me. Already cut high blood pressure meds in half!

karools16
karools16
in reply to PMRCanada

Ditto well done!!!

Wow! Well done! I admire your obvious determination. I am long past menopause and tracked how long and in what manner the tapering affected me and my side effects. My inflammatory markers were never very high and in no way were ever a clear indication of my level of pain. It will be up to me to dig deeply and find that same determination to stick with the healthy eating discipline that obviously helped you. As you’ve said it is a “lifestyle change” that will be wise long after PMR is banished from my body. Thanks so for sharing!

PMRCanada
PMRCanada
in reply to vnett

Thanks for your kind words.

You can do this vnett! The first month is the most difficult. I do treat myself on special occasions and while on holiday, then go back on track. Foods seem saltier and sweeter now that I’ve cut down, so easier to avoid. Exercise helps too.

We are hear to support you on your journey.

I generally follow a low carb Blood sugar diet, but once a week, usually a Saturday, I decide I'll have anything I want! It seems to work OK. I don't usually go too crazy in reality, perhaps a biscuit or crisps or curry and rice. I've learned wine and sugar are triggers for my flare-ups (which I think are partly due to another autoimmune thing not just PMR) so avoid them. I tried the AIP diet (Autoimmune Paleo) which made me feel a lot better, but found it just too restrictive to keep up forever, so have kind of found a way of eating that works well for me. Weight loss is very slow but steady unless I binge on holidays etc. Lost 2 stone over a year.

I had to smile at yout post.On my weekly grocery shopping day, I eat just what I want, and eat fairly sensibly from the next day.

Good for you tangocharlie!

I too treat myself while on holiday, and strive to achieve a low carb, sugar, and salt diet (not a strict “no” sugar/salt/carb). So far, so good.

I think that’s a very sensible approach! We all are already stressed by our conditions and to be in constant denial of the comfort some foods offer just adds to it. I plan to allow myself weekly treats too! I live in a wonderful city with countless good restaurants and plan to make the dining out experience my treat, enjoying without the “diet” restrictions. I just have to still choose wisely. Congratulations on your success with that system. Slow and steady really is a good thing! Take care!

You may also like...