This topic contains 12 replies, has 8 voices, and was last updated by 
DaiCro 12 years, 3 months ago.
Ok Guys one more try then in the words of Rab C Nesbitt I'll walk alone. Is there anyone out there that has had problems with diabetes which is connected with taking Dex? Last 4 blood reads as follows 17.5-11.8 yesterday then today before Dex 10.8 after Dex 9 hours later 24.4 which I think proves the fact that the steroids are causing the problem. That means I will have to start taking yet another Medication in order to force the blood sugars down to an acceptable level. I don't want this to be a permanent situation and then there is the added problem of Hypos which are very common. It's far too many things coming at me at once and my body is just braking up. I have total faith in the doctors in tackling the MM PP's currently at 1.2 but for what when my general health is total crap. I've little or no energy and not interested in doing anything because everything is such an effort. Yes I'm alive and of course that is something I am very grateful for but I also need to have enjoyment and purpose without which all else counts for little.
I'm now going to lie low for a while guys and regroup as I think I've banged the drum for long enough now and I'm getting sick of my own moans so rant over for the time being anyway.
Good health to all for the future.
Keith.
Hi Keith,
My treatment includes Dex (on it now in fact!) I was told not to eat sugary stuff (easier said than done) as it can cause _temporary_ diabetes like effects. So hang on in there. Not permanent, I think.
No wonder you are feeling crap, but it will pass I'm sure. When I've been physically low (e.g. Last wek neutropenic) my positive outlook has also vanished… And then it all bounces back. Peaks and troughs. You'll get back out.
Sorry if that isn't helping, i haven't seen your previous post and other replies. Do ask your doctors if you are worried. And Myeloma Beacon forum perhaps? Has doctors.
Also don't underestimate Dex mood effects?
Really good luck, take it easy,
Helen
Hi Keith
I wish I could help you but I cannot,I know Dex does not help sugar levels,plus I know since Slim has been on chemo his cravings for sugar are unbelievable, never touched sugar before,do I put him on a fad food diet,!!!,my attitude is what ever he will eat,cannot afford to loose any more weight:-S
I know all about green tea,green vedge plus spices just prove it to me,I do not buy it:-P
To put it bluntly,moan all you like,we all get p—-d of at times and any body who objects,try joining the real world.
Give people some time there might be people out there with the same problem or look at it another way you might be a trail blazer, there is a first time for everything even if you do not want to be there:-(Love Eve
Dear Helen & Eve ty for your early replies. I have always had a healthy diet with little sugar or salt. Oily fish and plenty of fibre at least twice a week. I always check the packaging when buying foods to make sure of a low sugar and salt content which is why I was annoyed when my latest test 9 hours from the previous one had more than doubled. Of course the one main difference was it was taken after starting up on the Dex again which proves Diet will make little difference and that Medication will need to be used,something I wanted to avoid if possible. I've never been overweight in my life although have a very good appetite. As long as it doesn't become a permanent situation then I will be happy but nobody seems prepared to commit themselves one way or the other. I suppose they are only protecting their own reputations because they just can't be sure but time will tell. One thing is for sure, there is a marked difference in how I feel when I'm at 10.8 as opposed to 24.4 so I've got to get it down one way or the other.
Thank's again girls it's most appreciated and do take care.
Keith.
Hello Keith
I'm so sorry you're having so many problems which seem to be caused by dex.
When I was on 6 months of CTD I hated the days when I had to take the dex. They were on days 1-4 and then 12-15. On the first 4 cycles I took 20 2mg tablets each dex day. Then I noticed that my feeling bad days were expanding every month so I mentioned it to my specialist and for the last 2 cycles I was on 20,20,10,5 each time. It did improve my good/bad days ratio.
The possibility of developing diabetes was never mentioned to me. My appetite was always surpressed whilst taking them, then I found I was ravenous a couple of days after stopping them. It took a lot of self control not to give into the cravings and put on loads of weight. My face always puffed up though and I looked like a chipmunk for a few days.
Being a newbie I don't know anything about you and what stage of treatment you're up to, but all I can recommend from experience is whatever's thrown at you during treatment, just tough it out and keep reminding yourself that your body will come through it all.
Take Care.
Hi Keith,
I believe that the Dex does cause temporary diabetes… the signs are easier to spot for me because Janet has type 2 diabetes. I asked my lead nurse about it a few months ago and she confirmed the temporary effect… but…
I realise that I am nowhere near qualified to question your medics but the reaction I got from my consultant (although she quickly covered it up) when I mentioned the dex dosage that a friend of mine on the same treatment was on was eye boggling.:-0
Your high dosage for the first four cycles seems preposterously high. I know how much I struggle on just 40mg of Dex once a week (DexDay as I write) and my consultant will drop the dosage as soon as my Light Chains reach a steady level. I cannot begin to imagine what my quality of life would be like on your dosage… I am strong and I can tough it out but at those levels? I believe I would looking for a compromise.:-(
What I don't understand is your medics thinking behind such dosages… if it is proven then why haven't the rest of British Haematology come on board? If it is experimental then that should be explained… with the option of higher or (standard) lower doses.:-|
Please stay active if you are able… your posts are always intelligent and informative and what you might see as moans and groans are to others confirmations or eye openers. Of course, sometimes you might just need to let fly and that's fine and dandy… if you can't occasionally show your soft underbelly here then where else is safe enough?:-)
Chin up.;-)
Dai.
Hi Michele and thank you for your reply. I'm on Rev/Dex after 2 sct's and 2 relapses last transplant lasted only 7mths first one 2yrs 4mnths. I've taken Dex on both my previous treatments but nothing like the amount I am now taking which is why my glucose level is being effected in this way.The Consultant wanted to hit the PP's hard which were rocketing up from 5-30 in the space of a month. They now stand at 1.2 which has only taken 6 weeks which is excellent but I don't want the cost to be too high. I was told the first 4 cycles are the worst and they were not kidding but from the 5th cycle on the steroids will be reduced to the 40mg on the first 4 days only instead of 40mg for every 4 days for 3 weeks of the the cycle with 4 day rests in between. I have tried the 10,5,3,1 to reduce the come downs and am now doing a 10 on the 5th day but tbh it makes no difference and it's another day less I have from taking them. I would rather have another rest day to allow my glucose level to stabilise. But for the Dex I would be ok and I certainly don't want the diabetes to be permanent and be reliant on insulin for the rest of my life and all the problems associated with it.
Thank's again Michele and do look after yourself.
Keith.
Nice to hear from again Dai and yes I also think this Dex dose is way too high and no nothing has been explained other than they wanted to hit the MM really hard. Well my PP's have gone down from 29.66g/L to 1.2g/L so I would have thought mission accomplished on that score? I go to the hospital on Mon and again I'm going to be asking some questions about this because I don't think this dose is necessary. I also see the diabetic nurse at the same time. My Glucose on 1/8 was 20.5 Consultant said as long as it's below 30 no need to worry hmmmm when Dex free 8/8 morning 17.5 evening 11.8 9/8 morning before Dex 10.8 evening after Dex 24.4 says it all. So we know what the problem is. Back down to 13.4 this morning and not taken Gliclazide as yet but phoned the hospital just to update them on the situation. Nurse said I should start from now as a high Glucose level will lower my already rock bottom immune system leaving me open to infection. So it's the devil or the deep blue sea being hit from both sides. Also I feel as if I'm living in a perpetual sauna sweating buckets and I know you have also had this Dai,are you still sweating it out? It feels as though a heart attack is coming on as I also have a terrible washed out skin colour when on the Dex and when off them it returns to normal. If it wasn't for this I would be ok and I think it could all be avoided which makes it that much more annoying. I don't mind paying a price worth paying but is it really necessary I have my doubts? I am into the last 5days of the cycle before the rest and I can't wait but with still 2 more cycles at this level to go I just hope my constitution can hang on in there and that the diabetes does not become permanent with all the problems that comes with it.
Thank's again Dai and keep well.
Keith.
Hello Kevin,
I do know of someone with Myeloma who has developed diabetes as a result of taking dexamthasone. Although I know she reads this, she does not post at the moment. I know she was on Dex for quite a while, but is hopeful that the diabetes might be reversed now she is off the dex andawaiting an SCT.
I hope things work out for you, it does seem sensible to reduce the dose of dex if they can if it is causing your problems,
Mari x
Hi Keith
Well you have some good answers so all I can say is Good Luck with it all on monday and hope you get something sorted, for me i had no problems re diabetes then or thankfully now.
Keep fit and good luck
Tom "Onwards and Upwards"
Dear Keith,
Hang on in there. I'm not just saying this as a mantra, I really mean it in your case.
It sounds as if there has to be better communication between you and your onc. My glucose levels have been veering and I'm now seeing an edocrinologist. Firstly, I'm sure dex can cause high glucose. I understand why your onc would wish to 'stomp' on the mm with a big dose of dex. However, there have been studies that compared two groups : high dose dex with revlimid and half the dex dose with rev. There was a noticeable survival benefit in the lower dex group. It's a difficult balance for doctors to achieve: between treating the illness and minimising the side effects.
My dex had to be really reduced after my relapse. I've written about this before but in case you haven't read it I had weight gain, increase in glucose, withdrawal syptoms after each hit of dex – the symptoms were so bad that I could only walk a few metres on some days and was shaking a lot. Also odd anxiety and states of mind that I couldn't recognise as being me. Eventually I got myopathy – major loss of muscle control and ended up not even being able to get up off the loo on my own. I must add that the myopathy resolved after a ten day break from dex and we re-started at a lower dose. Your dose is really huge.
I've been off dex for about six months now- am still on Thalidomide. I gradually got my muscles back and have had a really high quality of life. It's been worth persevering with the treatment. I've now improved my fitness and can walk a mile at a fast rate and do lots of things.
I also want to add that there are so many complex systems in our bodies; we sometimes don't know what's causing what. I had read that Thalidomide can cause hypothyroidism – low thyroid values that can require meds. I had such readings. I've been sent to an endocrinoligist who has examined me. A lump was found on the side of my thyroid – it's a large cyst. It could have 'irregular' cells which might turn out to be malignant. If so, I'm told this is a very treatable condition. I will know the results at 5.30 today and I'm in London on my own, waiting for the news. The edocrinologist is also going to explain certain things to me about diabetes. If I learn something new, I will pass it on to you.
In spite of all the stress, I've had really good times and it's been worth it sticking with the treatment. Please keep writing and let us know how you are.
Eva – in an internet cafe in an unfamiliar part of London.
Hi Keith,
Well with those readings it is certainly mission accomplished… which makes it hard to argue against the dosage, which is a pity… because you may well have gained the same results on a much lower dosage. The Revlimid has been doing the dirty work, shoulders down, grappling with the cancer cells, capping them and watching them implode… Dex does the back up work, maintaining the body, boosting the system.
I still get the sweats… several changes of tops especially but thankfully this is getting more and more contained to DexDays… once a week (today in fact because I felt too weak yesterday to face a DexDay).
But the med my GP prescribed on Wednesday has seemed to work miraculously… and I am feeling so much better that even my DexDay seems good.
Good luck for Monday… I hope you come home feeling much better informed and more hopeful of the next few cycles.
Dai.
Hi Eva,
The picture of you in an Internet Cafe somewhere in London, on your ownsome while waiting for such important news paints a forlorn portrait. Please keep in touch when you can and let us know the outcome.:-)
Wouldn't it be nice to have a group of volunteer 'safe houses' in major towns and cities where MMers (and other cancer sufferers) could drop in for a coffee, a chat or just somewhere inviting to wait for appointments, treatments etcetera… perhaps one day.8-)
All the very best.:-)
Dai.
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