[Anonymous]

Hello all

Henry still has 'The Rash' although it isnt as angry, but still over his torso (back and front)arms and neck. We had second visit to the Dermatologist (waited an hour and half to be seen!) and he said he didnt know what it was!! so we are going back next monday for a biopsy. I am still giving Henry anti histamine tablets to help with the itching but there is not much else we can do. He is back at work full time now and whilst he is looking a lot better Im worried he will over do it. Today he wasnt well and stayed at home (bad head, nausea and movement not good) one of our daughters looked after him, but I felt so bad going to work and leaving him, I was so tearful at work, and when i got home he said he missed me so much:( This is so heartbreaking. Henry is begining to hate going to hospital and being poked with needles. Only one more pentamadin IV and i presume in a few months a bone marrow test. I have my first counselling session on thursday and am very nervous for some reason, Im fine as long as people dont ask me how I am! Our daughter is running in the 10K British run in London on 8 July and being sponsored by Myeloma she has raised nearly £2000, and Im going to make some orange cupcakes and sell them at work for myeloma week. Every little helps 🙂

Im on twitter now if anyone wants to follow me!! @mrsssilverfox

Take care
love sarah
xxxx

[eveParticipant]

Hi Sarah
Sorry I cannot help you with the rash,Henry does sound if he is over doing it a bit,but that,s what men do,the desire to be back to normal is strong,Slim is the same.I do not know if this is any help to you,but Slim has used a product called POLYTAR from boots,its for people who have trouble with skin,I also rub him down with coco butter milk from boots this seems to help.

Slim has been attending the hospital for 18 months and only just, last month has had his SCT,as time goes on you do become an institutionalised patient and carer,its a known term,meaning you just get used to waiting hours to see doctor,s and nurses.

Sarah You need to look after yourself and have a few hours to yourself,I know its easy to say,and I find it hard to do myself but every now and then I meet a friend for a walk or drink and it does help.
I do pop a little white pill,which my doctor tells me it will keep my emotions under control,and so far I have not bitten any ones head off,so they must be working,although some times the tears are not far from the surface,so i just give myself a kick up the bum,It helps.Eve

[adamsp41Participant]

Hi Sarah…as posted before post SCT (Jan 2011) I did have itchy neck and arms…used to drive me mad! I went to my GP was put on anti-hystamine and tried a range of creams to ease the problem Dermol,Doublebase,Fucidin and Hydrocortisone to name a few…also put moisturising lotion in my bath water…some worked better than others but I found than none of them took it away completely…and lo and behold woke up one day and hey presto the itchyness had gone….strange happenings post SCT 🙂 …good luck with a solution and stay safe ..Phil

[SharonMParticipant]

Hi Sarah. I rarely check in on this site nowadays but saw your post this morning and felt I should reply. I had my SCT in January this year and have been struggling with illness ever since. I came home from hospital after my transplant and had to go back in less than a week later with a blood infection. The day I was coming home I developed an incredibly itchy rash in patches all over my face and body. I thought it may just be a drug rash. A reaction to the antibiotic I'd had. I came home and it got worse. The skin on my face thickened and went leathery. I went to my GP and had antihistamines prescribed. This did nothing. I went back and had steroids prescribed. They seemed to help at first but then the rash and the itching came back with a vengeance. I finished up going to the hospital at Sheffield where I have my treatment and asking my consultant to be seen by dermatology. I was told it wasn't an emergency so they wouldn't see me! IT IS TO ME! I was ready to do myself in. It drove me absolutely insane. I got to see dematology and was diagnosed with Sweet's Syndrome. I had a biopsy but the result from this was inconclusive so I'm still not certain what the rash is. Sweet's can be caused by a build up of neutrophils under the skin after having GCSF injections. This all makes sense in my case. It was treated with steroids. It keeps coming back but not as bad. The itching is the worst bit. I have Prednisolone left over from last time it flared up and just take that for a few days and it seems to calm it down.
I hope this helps.
Sharon.

[Anonymous]

Hi
Henry had his biopsy last monday and the rash seemed to be getting better. But has now come back and is spreading south, still quite itchy but he has stopped taking the anti histamine as it didnt really do much. We go back on the 26th july for the results from dermatology but im not holding my breath that they will have any answers. Apart from the rash henry is doing very well he is now back at work full time (a little tired but doing well, he went to the gym last weekend. xxxx

[tomParticipant]

Hi Sarah and Henry

Hope the rash is soon sorted.
And well done that Henry back at work and going to the gym 😎
Keep up the good work Henry

Love
Tom "Onwards and Upwards" xx

[Anonymous]

thank you Tom, we are getting there slowly. Today is exactly a year ago that we had our first visit to the haematology dept, so much has happened in that year and its gone so quickly, but we are doing good. xxx

[Anonymous]

Hi Eve
How are you and Slim? Im trying very hard not to do too much and try and relax – i had my first counselling session today and did actually feel alot better afterwards. I want to be able to talk about henry without getting so emotional as I just hid away from friends so I dont have to talk about it. The counsellor said they would be able to help me – so this is all good. I have joined a gym and along with my running find this a great de-stresser especially after work which i am really struggling with at the moment. But Henry is doing good and that is such a relief and lovely to see him look so well.
love sarah xx

[tomParticipant]

Thats great to hear, and it sounds like Henry is doing great.
Keep it up and keep well

Love
Tom "Onwards and upwards" xx

[Norton010Participant]

Good Morning Fellow Sufferers

This is my first post, I have read with interest a lot of your helpful and anecdotal comments and thought it was time I shared some of mine, no doubt now my children will be asking when I will be progressing to Twitter and Face Book (Never!!!!)

Following my SCT and the 100 days, I perhaps was luckier than some of you to feel so well albeit at times tired and a loss of stamina.

However towards the end of my 100 days I developed a rash on my chest in the area of a V (like you get from the sun while wearing an open neck shirt), I thought it was prickly heat or hives and was prescribed anti-histamines and steroid creams none of which gave any real relief, I just wanted to turn my skin inside out to get some relief.

I had been using E45 cream on some patches of very dry skin and was over zealous one morning with the amount I dispensed from the tube and to get rid of it I applied it to my chest and arms and found that it gave me some relief from the itching. I have since been using the E45 Itching cream twice a day and found it to be very beneficial. Also I have found that if I exert myself and sweat (Glow for you ladies) the rash gets inflamed, however a quick wash and reapplication restores the balance.

Are any of you out there on the new myeloma XI Maintenance treatment of Revlimid & Zolinza?

Kind regards to you all

AlaN

[tomParticipant]

Hi Alan
And a warm welcome to you, as for the "Twitter" I am on it and as for Face Book am also like a few more on her On it 🙂 so go on Alan you have got this far Ha ha.

I am on No treatment now 🙂 but I got a Rash after My SCT that was soon sorted, but I suffer bad skin prior to MM and used E45 and had to rush up stairs and wash it off as it was burning me??? am on steriod cream and have been for years and years now, good luck with yours.

I am now Drug free so al leave the comments for those that are on same as you.

Where are you being treated Alan?

Tom "Onwards and Upwards" x

[RogerParticipant]

Dear all

I also suffered from rashs after my SCT. My local GP recommended Aqueous Cream BP – available from any pharmacy in a 500g pot. I slapped it on all over and it worked a treat.

Roger

[Author]

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