Cellulitis for the 5th time in 10 months

Please post here your experiences of MDS as a patient, carer, family or friend

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red
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Cellulitis for the 5th time in 10 months

Post by red » 18 Jul 2014 16:51

Sorry folks but I'm blowing off steam. I'm now on 1000 mg four times a day of Flucoxacillin. Stumbled and knocked my leg and now it's swollen,red hard and extremely painful. Can't bare to stand on it. Oh blow back on the merry go round of infection antibiotics followed by thrush. Anyone know any good jokes? I need chearing up.
Winnie
Red
Red widow aged 70. MDS -20Q+t(1,9) diagnosed June 2013 on watch and wait. Lives in Somerset

Life is for living
MollyP
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Location: South East England
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Re: Cellulitis for the 5th time in 10 months

Post by MollyP » 19 Jul 2014 11:23

Hi Wnnie
Sorry to hear you are in the wars. If I tell you a joke it will have to be the punch line and you will have to tell me the joke, sorry I can never ever remember jokes. But I hope the sunshine soothes your soul and that you feel a whole lot better very soon.
Big hugs
Molly
Xxxxxxx
*** *** *** ***
69 yrs hubby - CMML 1 dx Feb 2013
raised Monocytes was watch and wait
Nov 13 hydroxycarbamide.
Jan 14 blood OK back on w&w
Jan 19 disease advancement to CMML-F (fibrosis)
red
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Re: Cellulitis for the 5th time in 10 months

Post by red » 20 Jul 2014 12:02

Thanks Molly,
Your reply made me laugh. Unfortunately my legs getting worse. Had to dial 111 and wait two and a half hours to get an appointment at the walk in centre 14 miles away. The doctor I saw Said he felt frustrated at not knowing about MDS and that there was no one he could contact for advise, he disagreed with the GP's prescription and has given me more penicillin. He was quite nice and concerned that he could not do more. I' m phoning the Haematologist nurse on Monday.
Winnie
Red
Red widow aged 70. MDS -20Q+t(1,9) diagnosed June 2013 on watch and wait. Lives in Somerset

Life is for living
davidmiller

Re: Cellulitis for the 5th time in 10 months

Post by davidmiller » 21 Jul 2014 11:04

Sorry to hear about your frequent bouts of cellulitis. I was diagnosed with MDS in July 2011 at level 2 on the IPSS scale and I am now in the middle of my 29th cycle of Vidaza. Last August I scratched me leg in the garden and later that day my leg swelled up and went the colour of beetroot.. My initial reaction was that it was a DVT although this was hardly likely with my platelet level. I therefore presented myself at 7.00 am. the following morning at A&E at the local hospital where I am being treated for MDS. The Staff Nurse who saw me said Crikey that doesn't look good and immediately sent me through to be examined. A&E were very thorough and ruled out a DVT and diagnosed cellulitis, the consultant had intended to send me home with a course of antibiotics but checked with my haematology consultant who decided that I should be admitted to his ward for IV antibiotics. There they painted the blue line around the swollen area in case it spread as they feared that I would get septicaemia which with my immune system would be very serious. Fortunately it all cleared up and 5 days later I was released .May I therefore suggest that in the case of future episodes of this or problems you do not delay and present yourself straight away to A&E.
Best wishes David Miller
red
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Re: Cellulitis for the 5th time in 10 months

Post by red » 21 Jul 2014 15:10

Dear David,
Rang my haematologist's nurse this morning at 8.20 tofind she was at a meeting, so emailed photo of my leg. She rang me back at lunch time to day Haematologist thought antibiotics would clear it up. In meantime I managed to get an appointment with my Designated GP who rang local hospital to get a bed for me to
go in and have introveinious antibiotics. They said go home from GP and they would ring to tell me what time to go in. About 2.30 GP rang to say change of plan more risk if I go in stay at home was Microbiologist's advice and to go back on 4000mg of Flucloxacillin and to ring if I got worse and GP wants to see me 9.30 to morrow, to keep an eye on me.
On Saturday out of hours GP said I should have an emergency number to ring. I asked haematology nurse who said as I'm not on Chemotherapy this was not necessary. I pointed out to her that as I suffered from Epidermolysis Bullosa I was more prone to infection and that I had in fact had blood poisoning 5 times in the past before being diagnosed with MDS. She gave me the ward number to ring for out of hours but said I don't know what they can do. Mentioned this to GP and he says he will see if this can be flagged up to 111 service as MDS did not make me a priority call for them. I was put on 2 hour call back by them. It took almost 3 hours before I got an appointment to see out of hours GP who was very nice but said he did not know much about EB or MDS.(red)
Winnie
Red widow aged 70. MDS -20Q+t(1,9) diagnosed June 2013 on watch and wait. Lives in Somerset

Life is for living
davidmiller

Re: Cellulitis for the 5th time in 10 months

Post by davidmiller » 22 Jul 2014 15:04

Dear Winnie Your story demonstrates the ignorance of MDS of some members of the medical profession. My GP had never heard of it and after several blood tests when he eventually referred me to a consultant it was in the wrong field and it was that consultant who referred me immediately to a haematologist and then things started to happen. There is a wealth of information on the condition on the internet and I sometimes tease my excellent consultant that I am better informed than he is. With their records of your history of cellulitis and septicaemia they should not mess about and deal with it immediately. Do not be put off.
Best wishes David Miller
red
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Re: Cellulitis for the 5th time in 10 months

Post by red » 22 Jul 2014 21:13

Dear David,
After the weekend I rang the Haematology Nurse, but could not get hold of her, one of the secretary said she was going into a meeting at 8.30. I asked for her email address and emailed a message and 2 photos of my leg. She rang back about 12.30 and said after looking at photos Haematologist said carry on with antibiotics as it looked as if they were working. In fact my leg was getting worse. I said that the out of hours GP had said I should have an emergency number. She said no I didn't need one as I was not on chemotherapy. I said I was prone to infection because of my EB as well as my MDS she said I suppose you could get the doctors treating me to ring the ward but she didn't know what they would do???? In fact at10am I'd managed to see my designated GP who was marvellous he rang the cottage hospital and got a promise of a bed.
At 2.30 GP rang me at home and said change of plan. The microbiologist thought it a better plan for my GP to monitor me daily and if I became worse to ring up. They put me back on 4000 mg of Flucloxacillin. I've seen him today at 9.30 and I have another appointment tomorrow.
The microbiologist said that as I had been on a high dose of antibiotic for 72 hours that it would not be as beneficial having antibiotics introveiniously and because of my susceptibility to infection this would be the safer option.. Tonight my leg is beginning to look a little better. My GP is going to put a flag warning on my notes so that in future it will be highlighted that I am very su susceptibil to infection.
I'm surprised at the response I got from the Haematology dept.
Regards,
Winnie
Red
Red widow aged 70. MDS -20Q+t(1,9) diagnosed June 2013 on watch and wait. Lives in Somerset

Life is for living
red
Posts: 67
Joined: 22 May 2013 14:25
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Re: Cellulitis for the 5th time in 10 months

Post by red » 23 Jul 2014 19:16

Had a rotten day today. My blood pressure went so low it was frightening. Apparently the combination of antibiotics and painkillers do not suit me. My medication has been changed and I see my GP on Friday. My leg is still very painful, swollen and red. It does, however, seem to be getting a bit better.
Winnie
Red
Red widow aged 70. MDS -20Q+t(1,9) diagnosed June 2013 on watch and wait. Lives in Somerset

Life is for living
red
Posts: 67
Joined: 22 May 2013 14:25
Contact:

Re: Cellulitis for the 5th time in 10 months

Post by red » 26 Jul 2014 18:22

Hi All,
Sunday I take the last of my antibiotics, my legs looking a lot better but by no means recovered. my GP has given me a box of antibiotics as an emergency supply and told me to go back next week if it has not cleared completely.
So fingers crossed. Friends and family have been. Very supportive. I'm very lucky.
Regards
Winnie
Red widow aged 70. MDS -20Q+t(1,9) diagnosed June 2013 on watch and wait. Lives in Somerset

Life is for living
chris
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Re: Cellulitis for the 5th time in 10 months

Post by chris » 29 Jul 2014 11:34

Dear Winnie

You have my sympathy as I have suffered from cellulitis many times since my white cells disappeared and it is agony. I expect you are doing this but I have found the one thing which really helps is to elevate my leg higher than my hips - use lots of pillows or the arm of the sofa. And not just every now and then but all day and all night too (pillows under my foot all night!). No good keep getting up and walking around as that sets it off again and delays healing.

Hot weather seems to make it worse I expect - especially with bare legs and feet. You have to be so careful not to injure or scratch your lower leg/foot as it is so prone to going into cellulitis. Prevention definitely the best option but sometimes despite care, injuries happen. I have an allotment and in all this hot weather I am very conscious of sharp sticks, plant labels, stinging nettles, biting insects and any number of other hazards just waiting to attack my legs!!

Let's hope it is on its way out now but maybe you can discuss a plan of action with your GP to knock it on the head next time?

Best wishes and take care

Chris
Chris. (F) Age 69 (2019). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
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