I have a bad cold - which cold remedies should I stay clear of and which can I take? I know I have to be careful with having ITP.

[NickyD]

[mags4743]

Hi Nicky - I sympathise with you. I hate having a cold and at this time of year when we all have so much to do. I know that you shouldn't take aspirin nor Echinacea but I have always found pharmacists very helpful and I'm sure if you told them about ITP they would be able to recommend something.

Hope it clears soon.

Mags 4743

[NickyD in reply to mags4743]

Thanks mags, have also just been told to avoid ibuprofen.

[kered in reply to NickyD]

Hi NickyD

I agree there are medications to avoid for ITP sufferers at the best of times and pharmacists are excellent but do avoid any products with NSAID's Paracetamol (with or without codeine as co-codamol up to 8mg)are fine and should not affect the platelet count.For a sore throat I use glycerine,honey and lemon. I think I remember that you are taking MMF as I am so the cold may last much longer.for some reason my platelet count is unaffected , and the cold always has cleared up

I also have a contingency plan if the cold develops into a bad chest infection,the problem can be when to activate as so far it has not been used.If you suspect that the condition is getting worse get an emergency appointment with the GP, failing that go to A and E,phone up directly your haematology unit (my first choice),or even 999 . Do not use the 24hour service and certainly not a triage nurse. As I said it has never been used and is NOT to panic but to reassure and give peace of mind.

L

[NickyD]

Hi kered - yes I am on MMF, I will go out and get some glycerine, honey and lemon for my throat. Good advice about going into hospital.

[AnthonyHeard Administrator ITP Support Association]

Hello Nicky, sorry that you have been struggling with a rotten cold/virus. I have actually just got over a stinker of a cold myself so I know how you feel. Like most ITP sufferers I am very wary about taking any medication and I just take paracetemol to ease the headache that the colds bring. Obviously we need to avoid aspirin, ibuprofen (including NUROFEN) and any cold/flu remedies that contain aspirin or ibuprofen (that includes Lem Sip and most over the counter cold/flu remedies). I also use Olbas oil, just a few drops in a bowl of boiling hot water, then put a towel over the head and breath in the vapor to clear the sinuses and the fug. Other than that plenty of rest, water, hot drinks of lemon and honey or Ribena, eat well especially fruit and vegetables and avoid too much dairy as it encourages the production of mucus. Also avoid alchohol as it reduces body temperature.

The sensible GENERAL advice is to consult your specialist and GP to ask what is best to take in your own situation, as we are all so different in our individual ITP cases. What ITP sufferers should keep in mind is that they MUST tell their GP that they are ITP sufferers (sounds obvious but many GPs are not always aware of your case unless you tell them especially as GPs do change quite a lot) and ALWAYS tell them what medication you are on NOW and what you have been taking in the last 12 months as it DOES have a bearing on what you can take NOW.

FOR EXAMPLE anyone who has taken PREDNISOLONE (steroids), they will remain in your system for anything upto 12 months and can impact on other medications you may take thereafter. SO DO TELL YOUR DOCTOR/GP/SPECIALIST your full medication history whenever you see them as the more they know about you the better they can hopefully treat you. NEVER ASSUME they know, always tell them !!!!

Despite all this what I find amazing is that my wife and I always get a cold in late November /early December every year no matter what we do to avoid it ! I guess that the hassles of work, planning for Christmas and general ITP issues don`t help but nothing will ever be as bad for me as December 2009 when the 4 years use of steroids delivered me a bout of shingles for Christmas. SHINGLE BELLS more like SHINGLES HELL ! I still itch a bit from it even now.

Anyway, take care and have a Merry Christmas and Happy New Year. Thank you for all your support on all our forums since we set them up in 2011, it is greatly appreciated.

Best wishes... Anthony

[NickyD in reply to AnthonyHeard]

Hi Anthony - straight forward sensilble advice as always. I have found that I manage my consultant when I see him. I am currently on mycophenolate and I emailed Drew Provan at Barts to ask what the regime was for lowering the dose. He emailed me back with when to drop the dose and by how much. I printed this off for my consultant and at our meeting on Monday he read the email and has adopted the advice. I am not treading on anyone's toes. My consultant has been educated and I am on a lower dose as a result. Win win. What could be better.

I had shingles last year - not pleasant.

I still get the shakes from the steroids I was on and know I have another 9 months before I can even start to think about them being out of my system.

Do you know, I have attended hospital over 130 times this year for my ITP - is that a record???

Have a lovely Christmas and New Year and happy to be of support.

NickyD

[AnthonyHeard Administrator ITP Support Association]

I think 130 must be a record. I might ask the question on our forums, obviously I would not reveal your name or identity but would simply ask the question as follows...

Since you have been an ITP sufferer what is the most number of visits you have nade to your hospital ?

It would be a good question for our next monthly poll in January so if it is ok with you I will ask it in early Jan for our poll on this forum and I can ask something like it on Facebook and Linkedin too. It will just be interesting to see what response we get.

For next year I will also try to devise a survey for folk to feed back their actual ITP experiences of hospitals/specialists/doctors/GPs. I have deliberately not done anything on it up till now as we needed to build up our numbers to a decent level first for responses to be meaningful and carry any weight or influence.

All good fun !

[NickyD]

I am happy to help in any way, I think you need to state a time frame ie how many visits made to hospital in a week, month or year - the most I did in one week was five.

May I suggest you increase the experiences to include dentists - some ITP ers have been excluded from some dental practices and sharing that knowledge would be interesting.

[AnthonyHeard Administrator ITP Support Association in reply to NickyD]

Thanks Nicky, all very useful suggestions. I will put together some questions after Christmas and post them out on the HealthUnlocked and Facebook forums. It will be interesting to see what folk are experiencing. I will include questions on dentists too as like you I have heard a very mixed bag of opinions.

[scaryteacher]

Lemsips (or at least the ones I have) contain paracetemol, no mention of ibuprofen on the packet at all.

What is good is boiling water with lemon, honey and a tot of whisky/brandy/rum. Hits all sorts of places.

[NickyD]

Thanks I have lots of lemons and plenty of honey - my cold is now moving into its fourth week!

[scaryteacher]

It's the tot that makes it work though!