[DaiCroParticipant]

I stated taking Amitryptiline last Tuesday after suffering several poor night's sleep that left me feeling down and almost out. I had an unopened (in date) strip of Amitryptiline prescribed by my GP in October 2010… prescribed for my PN. 😎

I slept well on Tuesday and Wednesday but forgot to take the Amitryptiline on Thursday… reverting straight back into sleeplessness. The sleep produced by the Amitryptiline was deep and the effects lasted well into each of the following days… but it was much needed. I then took the Amitryptiline on Friday and Saturday but something was occurring. I felt really 'out of it' on Saturday… numbed, breathless, fatigued beyond words with a 'stich' in my side, finding it hard to do the most simple of tasks.:-P

I thought 'here we go again'… I could almost guarantee that every time I have needed medical help it has been at a weekend… or, like now, a bank holiday. Because yesterday I felt I was slipping away… completely fatigued, short of breath, sleeping shallowly all the time, with the overall energy and 'get up and go' of an arthritic gnat. There was nothing I could put my finger on but I knew that this was more than a Rev or Dex side-effect.:-0

I could tell Janet was getting really worried… she was fussing over me, coo-ing and clucking… and Janet, wonderful in oh so many ways, is just not a coo-er and cluck-er.;-)

I was watching the golf… drifting in and out of consciousness… when Janet decided to take action. My temperature was normal… there was no signs that we could see or hear of breathing problems… I had enjoyed our roast lamb dinner… then Janet astounded me by asking me not to take the Amitryptiline last night. She said that she had noticed the effects gathering pace all week… effects that coincided with my taking the Amitryptiline tablets.

So I missed my dose… slept well… and woke up feeling as if the last five days of severe fatigue and dopiness had been a bad dream. :'-(

I will talk it through with my lead nurse on Tuesday afternoon but I am now certain that something in the mix between the Amitryptiline and Rev & Dex produces a powerful opiate.

For your information.:-)

Dai.

[tomParticipant]

Bloomin heck Dai I bet that was scary :-0 I am pleased Janet was on the ball 😎

I have always been told if I feel Unwell then I should phone the ward up and talk to them and they will make the decision whether to pop up or stay at home, I have used that adout three times so far and it works for us 😎

Hope all goes well for Tomorrow Dai and hope you get a good nite's sleep tonight.

Stay Fit and Janet Keep your Eyes On Dai xx

Tom "Onwards and Upwards" x

[BADGERParticipant]

Well Dia
Its a good job you have nurse Janet at your side I bet she knows as much about these drugs side effects and what effect have on you as anybody does
Stay well and good luck for tomorrow
Love Jox

[HelenParticipant]

Whoa Dai, you are lucky Janet is so on the ball, Horlick's (ugh) only for you now to help you sleep:-)
Helen

[DaiCroParticipant]

Well my day has been like the curate's egg… good in parts. The good part was that I woke feeling quite alert and with it. The foggy 'out of this world' feeling had been lifted after a decent, tablet free, night.

I got up and decided to shave… having had a very neat and tidy 'goatee' for a few weeks I went with the flow and had a clean shave. I joined Janet in the living room and we settled down for a lazy day… only I realised that I was sweating profusely and felt washed out. So I was alert but still shattered.:-|

After several shirt/tee-shirt changes I was getting fed up… and I felt hot. I have monitored my temperature for the past four hours because I have been here before with similar symptoms and nearly every time I have ended up with a fever. Perhaps I am being too sensitive and also perhaps a little paranoid but the slightest effort produces a bout of sweating. My temperature has remained at 37.10 all afternoon… which is okay but I remain nervous. So its to bed for me… to keep cool, drink plenty of liquids and try to hang on until tomorrow.:-S

I am at the hospital for my interim bloods in the afternoon , so as long as my temperature stays down I can wait until then for advice or assistance. I am fed up of feeling like a wet lettuce… if a simple task such as having a shave wipes me out… anyway, if this is a side-effect of the meds as I adjust to Rev & Dex then all well and good but the first five weeks passed almost without remark. As long as my bloods are okay then I don't mind… I can understand that anaemia might make me feel washed out but not the sweats and this overwhelming fatigue. 🙁

Excuse my moans and groans… but I've been here long enough to know that you won't really mind… Janet deals with enough, I don't want to frighten her… I think I'm doing well enough frightening myself. 😉 😀

Dai.

[brochoParticipant]

Blimey Dai you dont do things by half!!Thank goodness you have Janet watching out for you she must have been so worried . I think the sweats are likely to be Revlimid , when I was on it I would pour with sweat at the least exertion and I still have the same problem now I am on Thalidomide. It does get very embarassing but I suppose there are worse side-effects Ihope you get some answers at clinic tomorrow love to you and Janet x

[PerkymiteParticipant]

I know I said I will be right behind you Dai, but, I hope you won?t mind me dropping back a bit with this little lot 😀 😀

God, you are really going through the mill lately. Chin up young man – Vasbyte

Kindest regards

David

[tmcParticipant]

Hi Dai
How sarry was that. You were at the clinic this afternoon so I hope you will let us know how you got on.
Love Teresa

[DaiCroParticipant]

Hi Teresa and all,

Ah so… Janet took a few spare shirts and I was forced into quick changes when I got to the Haematology Centre and again after bloods. The phlebotomist was concerned because I was literally dripping with sweat throughout and a nurse stopped me on my way out and asked if I was okay… to which I said, 'Dex'… she looked dubious but nodded and passed by. I have never known anything like it… I was too embarrassed to wait in the main waiting area, so we slipped around to the clinic area which was empty.

My lead nurse had rung at 9.15am and asked me if I could change my appointment to 10.30am from 3pm… it takes us 45 minutes to get there, so we settled on 11.30am. I was convinced it was because my 'Freelight' test was back… and bad and that I would be seen by my consultant. I felt bad, sweating profusely for three days and in a bit of a funk. I didn't recognise myself… but as Janet said in the car, I had been in almost constant pain for nine weeks, My sleeping patterns were all over the place in a negative way, I had had a horrendous week-end but I was going to the right place… that I should be gentle on myself and concentrate on the positives… which, given the state of me, made me smile and the moment of funk passed. I am not good at not knowing… but when I do know, however unpleasant the message, I accept, move on and make the best of it.8-)

Sarah, my lead nurse grabbed a room and ushered us in. She and Janet exchanged a few pleasantries… she had made the change because she had nineteen appointments booked in one hour this afternoon and had to do some firefighting… my consultant was in Africa, on a child-safari with her husband and adopted son, she had been as excited as a child about the holiday for months… Janet gave me a nudge… yeah, yeah, so much for my conspiracy theory 😉 while they chatted I scanned my bloods results (I can read as good upside down as front ways up) and I was flabbergasted. At the last bloods my HGB had dropped to 9.8 and the reading was 11.2… I checked the name at the top and read through the rest… they were all as good, if not better, than the last results… feeling the way I did I found it hard to believe.:-0

Sarah was very pleased with the results… my kappa lightchains had risen by forty points but she said she was not concerned… that this was often the way during the first few cycles (I am halfway through Cycle two). She went on to say that the general bloods and my HGB in particular, indicated well… and that if the rise was due to the disease winning it would have been reflected in my bloods and they were fine… for this stage more than fine so she had no worries whatsoever and neither should I… and I haven't. Great news.8-) 🙂 😀

We moved onto my current problems. Sarah said that she ran a workshop at the Nottingham INFOday last year (Janet attended, I was at another downstairs) where the question of MM patients and sweating arose again and again. Ba at work she approached my consultant, Dr Cathy Williams, about the concerns and they started investigating the phenomena. In a nutshell… Dr. Williams says that sweating is not a direct result of having MM… that is MM does not produce sweating as part of its MO. The treatments themselves may induce a bit of sweating but not as bad or as random as exhibited by more than a few MM patients. Yet the patients most definitely suffer from prolonged bouts of sweating. Conclusion… they haven't got one… they accept the facts but have, to this point, have no idea why this is so.:-S

I asked one of the questions asked by the phlebotomist… could I be diabetic? Notes examined… no indication from tests carried out during hospital stays. Janet is diabetic and has a couple of testing apparatus… I will check for myself). Onto the next contention…. my arm and shoulder.

I first asked them to note my arm/shoulder problems nine weeks ago… again six, four and two weeks ago. Each time I was told that it was most likely a new area of disease and that Rev & Dex should take care of it. This time I persisted. Could it be a fracture? I had a similar injury, in my right shoulder, in April, 2009 and it took about three months to repair itself. That injury had been caused through picking up my then three year-old grandson… this time I could not recall any one particular but I had been warned by the Orthopaedic consultant at the Queens Medical Centre that such fractures could come easily by over-stretching or twisting the limbs suddenly.>:-(

So Sarah agreed to run the facts by a registrar. Off she went and ten minutes later she was back with instructions to go up to X-ray… they would be expecting me and she would ring me if they found anything. So off I trotted (for the first fifty yards, then I slowed down,,, its a long, long way and I was in a bad state) but I got there… did the necessary and Janet arranged a wheelchair back to a main entrance only fifty yards from our car… she was a star throughout… I knew I could not have made it on foot.

We got home and Sarah rang about an hour later. I have two fractures, one at the top of my arm and another, just across the way, in my shoulder blade. Ah bloody so. The fractures had been caused by an area of MM… and the sweats and general fatigue etcetera, in spite of my glowing bloods, were the result of Rev & Dex fighting hard to expel it. Nine weeks… I ask you.:-S

Sarah is looking at referrals back to the ortho-consultant to look at the possibility of pinning (nearly three years on from his agreeing this course of action), a meeting tomorrow with the haematology/radiotherapy consultant to examine the possibility of radiotherapy and the head of Daycase to look at fitting me up with an effective sling.

Me? I'm plumping and will be pushing (already voiced) for radiotherapy… it has always worked well for me and I know (Sarah agrees) that the ortho-consultant won't carry out any procedure while the MM is still active. The sooner the better, I have changed shirts, tee-shirts and jim-jam tops nine times today (a record) so bring it on.

Nine weeks, I ask you. Still, my Janet thinks that I have been an incredibly patient and very brave little soldier for enduring it all this time (perversely my shoulder and arm feel much better today… so hopefully this means that R&D are not only fighting but could be winning the battle). Get this problem sorted out… bring the Kappa's back down and out and R&D&Me could be onto a winning ticket.:-D

I'm back on track… hot, bothered and about to get a fresh jim-jam… but I'm back.:-D:-P

Thank you for putting up with my wobbles… but under the circumstances I will forgive myself… I have been exonerated… and you know… Janet is right… I have been an incredibly patient and very brave little soldier.8-) 😉

What a day… and what a difference a day makes in the course of MM. Ah so bloody so.;-)

Much love to all.:-)

Dai.

[HelenParticipant]

Well!!!!!!!!

I have no words! You just hang on in there and lets hope they can fix the pain now they know what the problem is.
Love Helen

[DaiCroParticipant]

Thanks Helen… but as I said, my shoulder felt better today than it has for weeks, despite all my physical exertions, driving both ways etc.. stupid, I know. but it still feels good now.

Dai.

[HelenParticipant]

I suppose you have just been getting on with stuff and so it decided today was the day to settle down, still it's good to know the reason behind the last few weeks pain. Hope it stays settled for you. I looked up the dexamethasone side effects in the products characteristics manual too and it says hyperhydrosis is a known side effect, doesn't give a cure though so not much help, I'm afraid. Hope you get some sleep tonight
Love Helen

[eveParticipant]

Hi Dai

I tend to think its the not knowing with all the anxiety and the inner knowledge,that even though you have MM,you know in yourself that something is not right,but when the experts say your ok,doubting Thomas comes in.
I have to ask what would a X ray have cost 9 weeks ago!!!!.Even if they thought you were wrong,what about your peace of mind,that alone warrants a X ray in my book.

When I was in Kings with Slim,a doctor was telling me about after care concerning an symptoms that he might have,I told her she did not have to worry,as after Slims treatment last time,if I think he is ill I will stand my ground against any expert telling me different,my thinking on it,is I will be grateful to them if I am proved wrong.
Look after yourself Dai,from verbal Eve

[DaiCroParticipant]

I have been called in this morning for a collar and cuff fitting.. the doctors are concerned that the fracture might move… it did! Nine weeks ago it was just my arm.

I do know that my arm and shoulder are getting much better… but I'll go along with them… as I push for a shot of radiotherapy.

Dai.

[tomParticipant]

Aww Dai

You have been Janet's "brave little soldier", and I remember saying it could be "An age Thing" sorry M8:-/ and I know its a strange thing to say but at least you now know its a fracture and I bet your "well being " is better as you now know what you have to fight and you just might get less pain.

Good Luck with the "Coller and cuff" am sure thats gonna be hell with the sweats

Tom "Onwards and Upwards" and not gonna put it down to age again 😀 x

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