This topic contains 49 replies, has 13 voices, and was last updated by 
Helen 13 years, 3 months ago.
Hi Kath thankyou its good to know it does get better Mind you the painful tenderness lasted the best part of a week this month so fingers crossed next month is better !! love Bridget x
Hi! I was just about to post and ask how many folk on Revlimid had suffered from horrendous muscle and joint pain when I saw your post. I'm glad it isn't just me :>
I've been on my week off and hoping that things would improve, which in all honesty they have done, but I am still so stiff and sore that I wince every time I need to move. Mornings are worst as after I have been lying in bed all night it feels as though my torso is wrapped in a concrete corset. Will these symptoms lessen in time, does anyone know?
I was started on 25mg of Rev + Dex but asked my consultant on Friday to lower the dose to 15mg in the hope it would help to alleviate some of the side effects. However, I must confess that the thought of feeling like this long-term isn't very appealing. Is there some hope that this stiffness and soreness will improve?
I noticed reading through the posts on this topic that someone mentioned kidney problems. My husband suffered from polycystic kidney disease so we learned a lot about looking after kidneys. One thing that can help enormously is to avoid caffeine. I drink decaffeinated tea and coffee, don't drink cola (no hardship as I hate the stuff!) and don't touch power drinks. It may help, although I am certainly not claiming that it will sort out all the problems associated with this wretched disease.
Jen
Hi Jen,
Peter has just started the 3rd cycle of Revlamid and mornings are 'achey' still but I think once the dex has stopped he will pick up again. The dreaded dex brings its own very unique side effects which seem to amplify everything.
I know now that once the effects of dex wear off he copes better with the Revlamid, his dose had been reduced and is back up to 25mg and must admit today he looks grey so hope the next few days are better.
I think that bone pane is worse when the drugs are hitting home and doing the thing there meant to. How annoying to have to feel so awful in the hope of feeling well.
Wouldn't it be good if you had a see thru bit and could see that the drugs are working then at least you would know it was worth all the discomfort.
Hope your over the worst of the initiation of Revlamid soon.
Min
Hi Min,
It sounds as though Peter has been going through the mill recently and I hope he soon picks up. The worst of my aches are starting to ease off, and I don't feel quite as stiff today, thank heavens. Mind you I have only had two tablets from the new reduced dose of Revlimid so things could change!
I find the worst thing about the Dex is that it gives me the shakes. I feel a bit hyper on the first day but that settles down; however, there is always a fine tremor running through my system that is so irritating. Still, hardly a life-threatening effect so I shouldn't complain.
I hope Peter gets through his third session without too many nasty side-effects. Having you there to help and encourage him will make a huge difference.
Jen
Hi Jen well after last week this week is so much better The soreness and tenderness lasted all week though .I am convinced it is dex in combination with revlimid that is the culprit .I am also on a reduced dose now ,15mg and the tiredness is less of a problem I know what you mean about the shakes , it really is annoying Still hopefully next month will be even better ,fingers crossed. Heres hoping we both feel better soon love Bridget x
Hi Bridget. It's good to hear that you are feeling better too. I had my first "normal" sort of a day yesterday since I started the Revlimid – dog-walking, working, then gardening – and it was so great to be able to get on with life. Although I am still a bit achy the pain has dropped back to its more usual level and is bearable. Onwards and upwards.
Jen
Hi Bridget,
Just wanted to know if you are still feeling better than you were. I am about a month behind you in terms of treatment (on second week of second mth of Revlimid +Dex)so it is interesting to compare how it has been affecting us.
I feel tons better since the dosage was dropped to 15mg and even think I have cracked – well, partially! – the Dex effect. I have always taken Dex first thing of a morning, re. instructions. However, this week I have been doing a lot of babysitting for my new little grandson and handling a small baby when you have the shakes is not a good idea. Consequently I have been taking the Dex at tea-time and it has been so much better!
When the worst of the shakes starts I am sitting down, on the sofa, so no problem there. And when I go to bed the worst of the energy rush hasn't yet hit me so I sleep. Then I seem to be full of energy the next morning and through the day, meaning that I have never stopped catching up with jobs that have been waiting to be done for ages.
Taking Dex this way was meant to be a one-week-only idea but I think I shall continue with it.
Do let me know how you are faring.
Jen.
Hi all. I am Helen and my mum started the RCD trial a couple of months ago. I must admit it is comforting to read all of your posts allows me to pass reassuring information onto mum. I think you are all so brave and positive and that is half the battle with fighting this disease. Mum went to see the consultant last Wednesday and her pp level has dropped from 16.5 to 5.5 so the doctors are pleased with how she is responding to the revlamid. I hope you don't mind me asking but mum has been suffering from a few side effects and I was wondering if these are normal. She has no appetite at all and has lost a stone in weight, she shakes ( I have seen posts above that say this is a side affect of the dex and today she has been sick and had diarrhoea and not been able to keep any food down. The second cycle finished on Sunday and mum had the bone strengthening infusion on Monday. Any feedback or reassurance would gratefully be received. Thanks so much and I wish you all well with your treatment. Best wishes, Helen
Hi Helen
When my husband was on Revlamid he had the shakes and poor appetite and s and d.
She needs to tell the trial staff of these things and they can give her medication for the s and d and perhaps reduce the dose of the Rev for a while. Whilst these things are know side effects that does not mean you have to SUFFER them there is medication to prevent it or make it more bearable. Make sure she contacts the team and gets something to help her, your Mum may think its just par for the course and she has to grin and bear it. But this is not so. her own GP may be able to help her too with simple medications for the S and D at the very least.
Hope this helps
Min
Thanks so much min. I will ensure mum calls the trials nurse in the morning.meanwhile I have told her to keep the fluids up.I think she is reluctant to take any more pills. I wish there was something to increase her appetite. My dad cooks delicious meals bu she just can't face it when it is put in front of her 🙁 How is your husband at the moment?
Thanks again x
Hi Helen,
He is fine thank you and looking forward to getting the next bit of this journey over and done with.
I know how it is with food that has been prepared with love and then rejected.
Once your mum has some anti sickness medication she will be able to eat. but suggest your dad asks her what she wants… then serves it on a tea plate. She may be put off by quantity and its easier to get more if she manages it.
There is a product called … Complan available at chemists and Big supermarkets, it is available in sweet and savoury varieties and is easy to digest and swallow and full of nutrients, the GP can also supply specialist drinks full of usefull calories and goodness.
Love MIn
Hi Helen sorry to hear your mum is having a tough time , hopefully things will improve soon , it can take a few weeks on Revlimid before things get easier You are probably right about Dex causing the shakes , it might be worth talking to the doctor about spreading the dose out , I now take mine every Monday for 4 weeks rather than for 4 consecutive days at the beginning of a course . I have found that I am prone to constipation for the first part of the week and often have almost diarrhoea for the last few days The sickness is horrible it would be a good idea to ask your mums specialist nurse about this especially as she is unable to keep anything down , there are a lot of different anti-sickness drugs its just a case of finding the right one for your mum. I hope your mum starts to feel better soon love Bridget
Morning Min. Really glad to hear that your husband is on good form and long may it continue. I will mention to dad about serving mums food up on a tea plate. Mum decides what she wants for dinner at about lunch time on each day however, when it is presented to her, she often cant face it.
Hi Bridget. Lovely to meet you. I have read many of your posts on here and they have answered a lot of un answered questions.
I really hope that things improve for my mum as she has had a rubbish week. She called the heamatology ward last night and she has been instructed to go to the Gp for a blood test so we are hoping and praying that everything is okay.
I have actually forwarded your message onto mum for reassurance that what she is experiencing can be resolved with (yet more) medication.
Do you mind me asking what stage of stage in the treatment you are at? Have you had STC yet?
Take care both and again, thanks so much for your support. It really helps me and mum xxx:-)
Hi Helen I am glad your mum phoned the ward , I used to hesitate about phoning for advice but then I quickly realised there is no point suffering when there is usually a solution to be had . I was diagnosed 5 years ago after a year of awful back pain. Eventually I was diagnosed and by that time 3 vertebrae were destroyed, I then had a spinal reconstruction and my back is now mostly metal plates and rods . I had an sct in 2007 and had 18 months partial remission . When I first relapsed I went on the Myeloma XTrial which didnt work out great for me Second relapse was a few months later and I have been on first Velcade and now Revlimid since then Like most of us there have been a lot of ups and downs , I am not as mobile as I was nor as active but life has a sort of normality , different than before but myeloma doesnt fill all my days So tell your mum things really do get easier as you go along and you get to know your own limits One thing I learnt fairly early on is to listen to your body and rest when you are tired, no point in struggling to do something when it will still there for another day The other thing is never to ignore any new pain that persist , always mention it to the nurse or doctor who can check it out , saves a lot of middle of the night worrying too Take care Helen and best wishes to your mum love Bridget ps sorry for rambling
Bridget, you were not rambling at all. Wow, you are so brave. You sound like you have really been through it over the past few years but so glad that you are finding life to be a little more normal now.
It is so frustrating as mum and dad retired together about a year and half ago and they were looking forward to it so much. Now they are faced with this and it just doesn't seem fair. I am sure that this thought passes through many sufferers of the disease.
Mum just spoke to the consultant and he has taken bloods to find out if anything is up and they have also taken her off the Revlamid for a couple of days to see if that makes a difference at all.
I hope she doesn't get taken off it as it seemed to be doing the trick after the first cycle.
Anyway, I hope that you have a nice weekend and keep on posting on here. your advice is so useful and often inspiring.
Take care Bridget
Love Helen x
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