Jump to content


Congrats to Margaret, Platinum Member with 1,000 posts and 10 Years of Forums Membership!


Photo

Swine Flu Vaccine and other issues


  • Please log in to reply
11 replies to this topic

#1 trishtrub

trishtrub

    Bronze Member

  • Members
  • PipPip
  • 14 posts
  • Location:Wolverhampton, United Kingdom

Posted 20 November 2009 - 04:27 AM

Hi everyone,

I have CREST and suffer with aches and pains, although I find fatigue is one of my worst symptoms. When I was first diagnosed I was in lots of pain and very tired so was on sick leave. I have gone back to work three days a week, eight am till one thirty , I am totally exhausted and need a nap when I get back, do others find this too?

I work at the hospital doing clerical work and we have been offered the flu vaccine and now the swine flu vaccine. My husband asked at our doctors and was told that CREST isn't in one of the high risk groups. What advice have other CREST sufferers been given?. Nervous of having injection in case it starts me with a cold that will, as it always does, end up on my chest!

Also I have esophagus issues, only mild I think, but I sometimes get very bad pains in my chest which almost double me up and can last a while, is this a symptom others with esophagus issues get?

Lack of get up and go! Some days I can walk fine and have energy, other days I feel that walking up the stairs at work or dropping my daughter to her friend's house up the road is like trying to climb a mountain! I had a scan on my my heart and a lung function check earlier in the year and these seemed to be ok so do you think its the fatigue causing this?

Last thing I promise, yipee holiday is nearly here my children are twelve and ten so I am going to enjoy every minute with them because they are growing up so quickly and will soon just want the money and find my suprises very uncool I'm sure!!! The only problem is that with holiday comes the cold weather and I have been pretty much Raynaud's free thanks to mild weather and adalat tablets, but in the last week I have had about half a dozen episodes, lots of nice gloves and thermals on my holiday list!!!

Just reread what I've written and hope it makes sense, all very disjointed I think, It's nice to be able to come on and talk about issues others might think was just whingeing!! Catch up soon x

Love to all xx
Trish x

#2 Joelf

Joelf

    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,616 posts
  • Location:West Sussex

Posted 20 November 2009 - 09:35 AM

Hi Trish.

I've also got Limited Scleroderma with unfortunately lung involvement & was a bit worried about having the swine flu vaccine (mainly because I never trust this Government to reseach anything properly & thought they might have rushed it through with insufficent research into the side effects. ;) ) However it is a 'dead' vaccine & I confirmed with The Royal Brompton Hospital who deal with my lung fibrosis that it was okay to have it.

When I contacted my doctors the receptionist/nurse was extremely snotty about it; she gave me the impression that I was just making an unnecessary fuss & that there were far worse cases than me not receiving it etc. etc. etc. I'm afraid I had a hissy fit :temper-tantrum: & pointed out very cuttingly that I have a chronic lung condition & I wouldn't be going to The Royal Brompton every four weeks for IV Cyclophosphamide if I simply had a head cold!!! :angry: Unfortunately the average G.P. knows very little about Scleroderma & the resulting problems from it; however mine do now because I told her all about it!!! ;)

The result is that I've now been booked in for the 2 jabs; so I can hardly refuse to have it now after making such a point!!! ;)

As far as the fatigue goes I was very much worse before I was put on my medication of Prednisolone; that got rid of most of my awful aches & pains & swelling in my hands, wrists & knees although it did have me swinging off the chandeliers at first!!! :rolleyes: Sorry I can't advise you on the oesophagus issues as thankfully so far I haven't had a problem with that at least.

I do hope you have a lovely holiday with your children. :D

Kind regards x

Jo Frowde
ISN Assistant Webmaster

SD World Webmaster
ISN Sclero Forums Manager
ISN News Manager

ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)


#3 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 20 November 2009 - 11:25 AM

Hello Trish

Long time no hear!

Fatigue and crippling at that is unfortunately one of scleroderma's trademarks. Some days are better than others although I still find the more I do one day the less I can do the next. I understand that the fatigue gets better with time but never goes completely. For myself the fatigue I have at year 2 is worse than at year 1 and I thought it was supposed to go the other way! :emoticon-bang-head:

Even though you recently had an ECHO? you should talk to your doctor about the pain in your chest. It could be eosophageal spasms but I say that as a non medical layperson so you really need to discuss this symptom with your doctor or rheumatologist to be safe.

I was today lectured by Ma about having the swine flu vaccine along with the regular one which I suppose I might do at some point. I think it's something to again discuss with your doctor or rheumatologist.

Yes it's mittens time again! I bought a pair today and I now go for mittens instead of gloves because it's very difficult to get my sclerodactyly fingers into gloves.

I hope you have a great time over the holidays with your children and family even if Raynaud's comes along for the ride!

Take care.


Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)

#4 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 20 November 2009 - 11:30 AM

Hello All

As steroids are being discussed I would like to remind you that:

Corticosteroids strongly increase the short-term risk of developing scleroderma renal crisis.

Take care.
Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)

#5 tisonlyme

tisonlyme

    Bronze Member

  • Members
  • PipPip
  • 21 posts
  • Location:Cheshire England

Posted 23 November 2009 - 09:15 AM

Hi Trish,

I only joined the forum a few days ago but have just read your post and can't believe a doctors surgery doesn't class someone with a chronic autoimmune condition as high risk enough to have the vaccine, it's madness. I wasn't even aware that the vaccine was available until my general practitioner sent me an appointment for the jab (along with my usual flu jab appointment) - it just shows the difference in the understanding of the condition. I would pop along for a chat with your general practitioner if I were you, hope you get it sorted.

As for the Raynaud's - I have Adalat too and it has helped so much. Have you tried heated gloves at all? I got some from my rheumatology clinic - when I was first diagnosed my Raynaud's was my biggest problem. I'm not sure if other hospitals in the UK also provide them but it's well worth finding out (apparently they do socks too?)

Take care and keep warm,

San
x

#6 lizzie

lizzie

    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 497 posts
  • Location: UK

Posted 24 November 2009 - 11:33 AM

Hi Trish,

I rang my general practitioner surgery today to ask if they had started giving people swine flu jabs yet. The receptionist I spoke to said that people who needed one had been sent letters, and that they were only giving them to people in priority groups e.g. people on immunosupressants.

I pointed out that I am on Methotrexate and that therefore should presumably have been offered it. She then looked at my record and said that there was no note to say that I needed it! When I said that I was sure that I should be having it she said she would leave a note for someone (don't know who!). Think I will have to call in to the surgery in person to get it sorted.

Lizzie

#7 Buttons

Buttons

    Senior Silver Member

  • Members
  • PipPipPipPipPipPip
  • 610 posts
  • Location:UK

Posted 25 November 2009 - 05:05 AM

I've had the yearly flu jab last month and thought my general practitioner would write to me about the swine flu one but they haven't. I was told I'm in high risk group because of the systemic scleroderma (SSc) and asthma which is always bad whenever I get an infection of any kind. Where I live it was in the newspaper that they would be giving it first to health care workers before the at risk groups.

I wear gloves and then a pair of sheepskin mittens over the top of them along with a down coat, I do look like a man in the tyre ad, but at least it helps to keep me a bit warmer.

Butons

#8 trishtrub

trishtrub

    Bronze Member

  • Topic Starter
  • Members
  • PipPip
  • 14 posts
  • Location:Wolverhampton, United Kingdom

Posted 25 November 2009 - 09:35 AM

Hi all,

Thank you very much for your replies.

I took Amanda's advice and went to my doctors today, regarding chest pain. The doctor sent me to the emergency admissions department where all of the staff were wonderful and gave me ECG, bloods to check for clots and chest Xray. All came back okay so they basically said its CREST related pain and take Ibuprofen! They don't think its esophageal spasms as I'm taking Lansoprazole. I will be seeing my rheumatologist in December so will discuss it with him then.

My doctor asked me if I had had my swine flu jab today and I said that my husband had been told by the surgery that I wasn't in high risk group, she seemed a little surprised and said I really do need to have them, so I will be having them next week!

Oh yes definitely time for thermals and layers, Raynaud's becoming a regular occurrence again!

Nice to speak to you all again.

Take care and thanks for all your support,

Trish

#9 sarahc

sarahc

    Newbie

  • Members
  • Pip
  • 3 posts

Posted 28 November 2009 - 10:40 AM

Hi,
I also have CREST and was offered both flu jabs as I have asthma as well. I can't have the jabs as I am allergic to them but if I wasn't my general practitioner would recommend me to have them.
Sarahc

#10 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 29 November 2009 - 04:22 AM

Hello Trisha

I'm glad you went to your doctor and that the tests did not show there was a problem with your heart, always a concern with chest pain. I would be interested to know what your rheumatologist thinks it is.

Take care and keep posting.
Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)

#11 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 29 November 2009 - 04:24 AM

Hello Sarah

I'm sorry you're allergic to the vaccines and hope that you stay flu free this winter. :emoticons-yes:

Take care.
Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)

#12 Deb1million

Deb1million

    Silver Member

  • Members
  • PipPipPipPip
  • 108 posts
  • Location:Maldon, Essex, UK

Posted 03 December 2009 - 11:58 AM

I've just had my first H1N1 vaccination. I'd already had the seasonal flu jab last month, no problem. I have diffuse sytemic sclero, as well as having multiple autoimmune conditions.


The doctor says anyone on immuneosuppressants will need 2 shots of the vaccine at least 4 weeks apart, so next one is after the holiday.
I've not had any reactions to the jab so far, apart from a sore arm, but it was only today, I'm hopefull it will be fine.

Take care everyone