Please add to our discussion forum. (Please do not use the forum for advertising.) http://www.pia.org.uk/forum99849144/list.php?1 Thu, 09 Sep 2010 10:08:51 +0100 Phorum 5.2.7 http://www.pia.org.uk/forum99849144/read.php?1,33462,33462#msg-33462 http://www.pia.org.uk/forum99849144/read.php?1,33462,33462#msg-33462 Tkx a lot!!!]]> larisa General Discussion Tue, 07 Sep 2010 06:31:20 +0100 http://www.pia.org.uk/forum99849144/read.php?1,33453,33453#msg-33453 http://www.pia.org.uk/forum99849144/read.php?1,33453,33453#msg-33453 Doctors seem of little help, my GP believes it entirely due to CVID and after blood tests, insists there is little(nothing) to do. My immunologist fails to see any link and passes it back to the GP.
Most helpful is my Chest specialist(works in a different hospital 2 hours away) he spent time monitoring my heart and blood pressure and virtually a full body scan, all of which come up blank I presume(that's probably for the best!),I still have an appointment with an endocrinologist, seems a pretty feint hope though.
The conclusion I come to after reading back through many of your posts, is that this is something I have to put up with, it could be a lot worse.
Can somebody confirm this thought for me, put an end to my wingeing, and get on with it lol
Steve]]> slf General Discussion Wed, 08 Sep 2010 21:26:06 +0100 http://www.pia.org.uk/forum99849144/read.php?1,33442,33442#msg-33442 http://www.pia.org.uk/forum99849144/read.php?1,33442,33442#msg-33442 My 9 y.o. is currently injecting 10cc of hizentra into two sites once a week. She's been doing well with it, but the problem is that she only likes to use her tummy and I'm concerned that we are not rotating the sites enough. She's starting to get some discoloration in the area and the bumpiness seemed to last longer than usual after the last injection. I do try to find different places around her belly, but she's only 9 so the available surface area is not huge. We've tried her arms in the past (subq area near the triceps), but she found that uncomfortable.
We were thinking about the legs, but her outer thigh doesn't seem to have much chub and I'm not sure if the inner thigh would be difficult logistically (eg. would it be uncomfortable to walk afterward?).
I'd appreciate any advice regarding sites that you find work best and how frequently you rotate your sites. Thanks!
Kathy]]> kazaro General Discussion Wed, 08 Sep 2010 21:36:57 +0100 http://www.pia.org.uk/forum99849144/read.php?1,33432,33432#msg-33432 http://www.pia.org.uk/forum99849144/read.php?1,33432,33432#msg-33432
Emma has had two good weeks at school and loves it. It is Sunday and Emma has spiked 38.6. I know we should phone the hospital but i'm hoping her temp will come down,( I'm just kidding myself).

Hope you are all keeping well,keep you posted.

Jacqui Emma's mum AIN]]> Jacqui Mckeown General Discussion Mon, 30 Aug 2010 17:06:59 +0100 http://www.pia.org.uk/forum99849144/read.php?1,33414,33414#msg-33414 http://www.pia.org.uk/forum99849144/read.php?1,33414,33414#msg-33414 We had been in the dark for many years...at least since we've know each other, which is 16 years. Mark's symptoms have been many, ranging from, Vitiligo, bowel problems, skin problems and then the big run up to diagnosis with several (more than I can count) pneumonia episodes.But the more he looks back the more he sees all the other symptoms of his childhood, ear infections etc.
Mark has had lots of antibiotics, even a long term low dose one from his respitory consultant. The stress of never knowing what was really going on was difficult. There were times through the most horrendous bouts of infection that I thought I was going to lose Mark. And finally when the amount of chest infections had surpassed what must have been the respitory consultant's criteria, he FINALLY referred him to the Immunlogy Dept and we got the diagnosis! It was a relief. Finally, other people who knew about this who could help him. I was so grateful and still am. Mark is very well now, thanks to the immunoglobulin replacement every 3 weeks. We're both learning how to do home therapy and it's a bit scary at times but it shouldn't be too long before we're 'home alone' and doing the treatments together. I'd love to exchange thoughts, fears or any other process that anyone goes through during this journey. Thank you. Karen.]]> Kaz-C General Discussion Tue, 07 Sep 2010 22:08:12 +0100 http://www.pia.org.uk/forum99849144/read.php?1,33401,33401#msg-33401 http://www.pia.org.uk/forum99849144/read.php?1,33401,33401#msg-33401
After 20+ years as a die-hard self-administering home IVIG patient I have finally made the switch to sub-cut.

Recent gastro-intestinal problems had resulted in a doubling of my IVIG infusions and hopefully the sub-cut will provide a more standard baseline.

I've started off on Vivaglobin and am hoping to switch to Hyzentra later this year.

First two infusions went without a hitch and it's a real joy not to have to think about finding veins any more.

Best wishes to all.]]> Andy J General Discussion Thu, 02 Sep 2010 18:53:18 +0100 http://www.pia.org.uk/forum99849144/read.php?1,33397,33397#msg-33397 http://www.pia.org.uk/forum99849144/read.php?1,33397,33397#msg-33397
jo]]> xxraymondonexx@aol.com General Discussion Fri, 27 Aug 2010 11:25:47 +0100 http://www.pia.org.uk/forum99849144/read.php?1,33396,33396#msg-33396 http://www.pia.org.uk/forum99849144/read.php?1,33396,33396#msg-33396
Thanks, Penny]]> lindpe1 General Discussion Fri, 27 Aug 2010 08:26:31 +0100 http://www.pia.org.uk/forum99849144/read.php?1,33388,33388#msg-33388 http://www.pia.org.uk/forum99849144/read.php?1,33388,33388#msg-33388 cowgurlatheart1986 General Discussion Thu, 02 Sep 2010 19:00:48 +0100 http://www.pia.org.uk/forum99849144/read.php?1,33381,33381#msg-33381 http://www.pia.org.uk/forum99849144/read.php?1,33381,33381#msg-33381 I just want to thank everyone for all their support when things were looking bleak last year and wish you all well.]]> Minstrel101 General Discussion Mon, 23 Aug 2010 15:49:04 +0100 http://www.pia.org.uk/forum99849144/read.php?1,33374,33374#msg-33374 http://www.pia.org.uk/forum99849144/read.php?1,33374,33374#msg-33374
Emma has completed her 1st week at school. I was soooo worried how she would bebut she has been great.

The teachers have been great and have put our minds at rest that they will take care of Emma. Emma's teacher even went on the internet to get more info on AIN which I thought was very nice of him.

Emma got an MOT before she started school she is not showing any signs of growing out of AIN but at least her bloods haven't got any worse, I suppose this winter will be a sign of things to come.

I hope you are all well

Take care

Jacqui Emma's mum AIN]]> Jacqui Mckeown General Discussion Tue, 24 Aug 2010 10:35:51 +0100 http://www.pia.org.uk/forum99849144/read.php?1,33366,33366#msg-33366 http://www.pia.org.uk/forum99849144/read.php?1,33366,33366#msg-33366
I'm a CVID patient. I recently had a colonoscopy and had a large amount of polyps removed.
Apparently the growth of these can be common in people with immunodeficiencies. I was never aware of this until now. I would appreciate feedback from anybody with similar problems

Keep well
Joe]]> Joesph Coyle General Discussion Wed, 08 Sep 2010 21:05:13 +0100 http://www.pia.org.uk/forum99849144/read.php?1,33365,33365#msg-33365 http://www.pia.org.uk/forum99849144/read.php?1,33365,33365#msg-33365
My immunoglobulins are technically normal, but have been dropping. Initially, my total IgG was a little over 1000, last time they were measured they were a little over 800. My white count has been between 3700 to 4100 for a year and a half, previously, it had been higher. My NK cells have been low for a year and a half and I have leukocytosis.

My immunologist decided to vaccinate my with the pneumococcal vaccine and the tetanus/pertussis/diphtheria vaccine. My response to the vaccines was good. I'm disappointed by this because I thought maybe if that proved to be abnormal maybe I could start IVIG and could be healthy and normal again. Can IVIG help even if you respond to vaccines? I feel like my body needs an immune system boost because I can't fight the infections on my own, even with antibiotics, they're only suppressed, but don't go away. I'm so desperate right now.

My infections are mainly dental, which then spread to the sinuses, mouth, neck, and face. My doctor thinks my gallbladder is infected and I had a HIDA scan but don't know the results. I think the gallbladder is actually somehow infected from the tooth infections, because that always gets worse when the teeth get worse. Also, I've had almost constant UTI's, but my immunologist thinks that may be caused by resistance from the antibiotics I need to take for the other infections because my urology tests showed that there were no anatomical abnormalities. I do take Bactrim now to prevent UTI's with some success, but that doesn't help with the constant infections popping up from my teeth.]]> sms21 General Discussion Tue, 24 Aug 2010 05:44:01 +0100 http://www.pia.org.uk/forum99849144/read.php?1,33345,33345#msg-33345 http://www.pia.org.uk/forum99849144/read.php?1,33345,33345#msg-33345
We hope you will join us at the PiA Annual Meeting and Yorkshire and Humberside Regional PID/HAE Patients' Event.

Please note the date has been changed to Saturday 20th November 2010 and if you are interested in attending, or have any questions, please get in touch on 020 7976 7640 or info@pia.org.uk.

Best wishes,

PiA Staff]]> PiAStaff General Discussion Thu, 12 Aug 2010 10:49:50 +0100 http://www.pia.org.uk/forum99849144/read.php?1,33336,33336#msg-33336 http://www.pia.org.uk/forum99849144/read.php?1,33336,33336#msg-33336 34240dina29690 General Discussion Mon, 09 Aug 2010 15:40:27 +0100 http://www.pia.org.uk/forum99849144/read.php?1,33334,33334#msg-33334 http://www.pia.org.uk/forum99849144/read.php?1,33334,33334#msg-33334
Just after any thoughts you may have.

I came down with a bad dose of the flu about 3 months ago. First time I've had 'proper' flu and it knocked me about a bit. Ever since then I've been running a temperature and it won't go down. Granted, it's come down a lot from what it was in the height of my flu bout but it's never 'normalised'.

They don't seem overly concerned at the hospital and aren't really sure what to do as I have no other symptoms other than feeling a little under the weather. It's affecting my IVIG as my veins are non existent and I'm getting a bit distressed now every time I go as I know it's going to be problematic trying to infuse.

My immuno suggested taking a break and relaxing but after a week lying on a beach in Portugal and doing lots of nothing I still have a temperature.

Any ideas anyone?

Thanks

Deb x]]> debonair General Discussion Wed, 08 Sep 2010 21:48:51 +0100 http://www.pia.org.uk/forum99849144/read.php?1,33323,33323#msg-33323 http://www.pia.org.uk/forum99849144/read.php?1,33323,33323#msg-33323
Just a quick question, are there any restrictions on having a tattoo with CVID?

Thanks

Deb x]]> debonair General Discussion Thu, 05 Aug 2010 11:17:46 +0100 http://www.pia.org.uk/forum99849144/read.php?1,33312,33312#msg-33312 http://www.pia.org.uk/forum99849144/read.php?1,33312,33312#msg-33312
Just wondered if anyone was going to the PIA annual meeting in Sheffield 18th September. We missed the one last year in our hometown as Joshua was in hospital. Would be nice to put some faces to the names on here.

Ang (mom to Joshua 22mnths XLA)

xxx]]> baggiejosh General Discussion Mon, 09 Aug 2010 08:48:42 +0100 http://www.pia.org.uk/forum99849144/read.php?1,33307,33307#msg-33307 http://www.pia.org.uk/forum99849144/read.php?1,33307,33307#msg-33307
I have HAE but for the most part I am mostly unaffected by it. My only episodes of swelling were a few years ago when I tried the combined contraceptive pill for the first time. By the time I had finished the first pack, I had swelling in my airways and ended up in hospital for a few days. Bit of a scary first episode really! I've since changed contraception (to Mirena which is progesterone only) and have been fine with this.

Last month and again this month I have been experienced abdominal discomfort and this has coincided with my period. Last month I thought it was a tummy bug but it lasted for 5 days and hurt to even drink water. It wasn't typical at all of anything gastric. This time round my tummy is noticably larger than normal and feels very built up with pressure. Even when sitting still or lying down it really hurts and feels heavy? On walking it feels like I have a constant stitch. GP has been next to useless. On asking whether this could be related to HAE I was told "Perhaps" and that was that!

Is anyone aware of a link between menstrual cycles and HAE attacks? Or can anyone simply list their experiences of abdominal swelling e.g. how long it lasts, what symptoms there are etc. I'm really hoping its not anything to do with the HAE. I'm 28 now and hoped that I would be only of the lucky few who had it but didn't experience attacks.

Thanks]]> ScottishLass General Discussion Tue, 10 Aug 2010 10:46:43 +0100 http://www.pia.org.uk/forum99849144/read.php?1,33288,33288#msg-33288 http://www.pia.org.uk/forum99849144/read.php?1,33288,33288#msg-33288 I have posted on this board regularly for about 10 months. A few days ago I did a search in Google using a medical term. I was surprised to see one of my posts to this forum in the search results for Google.
I am not naive about privacy and the Internet. I have a username, and have kept my email address private. However I did not expect to read about my personal health symptoms on the open Internet.
I looked at my postings and realized that I had also (in several posts) supplied my real first name, my location, and quite a bit of my health history, past and current. I have not posted anything I am ashamed of, but I am not so sure that I want personal details and health descriptions available on Google.
I have been thinking about this for a few days, deciding what to do. Coincidentally, there is an article in the New York times today concerning privacy, the Internet, and ownership. After reading the article, I decided it was best to erase all my posts. I looked for a way to do it more cleanly, but this method was the only one I could figure out.
I apologize for any lack of continuity this has caused in the discussion board.
I wish all of you good health and happiness.
Take care.]]> zgirl General Discussion Mon, 26 Jul 2010 21:30:47 +0100 http://www.pia.org.uk/forum99849144/read.php?1,33272,33272#msg-33272 http://www.pia.org.uk/forum99849144/read.php?1,33272,33272#msg-33272
I posted a few months back asking for advice and since then Oscar has been poorly, yet again, and we've also had his Immunoglobulins retested.

Basically, he has had 4 hospital admissions, 3 lumbar punctures, 3 lots of IV AB's 3 lots of oral AB's (separate occasions), diarrhoea and is anaemic.

His IgM came back low, his IgA borderline low and IgG in the low range of normal. But they are assessing these against the adult ranges - a the childen's ones just generically lower, as from what I've seen I don't think that's the case?

Despite admissions, illnesses and bloods both the GP and Consultant Paediatrician are refusing to refer him to an immunologist, but in the same breathe are telling me not to send him to nursery or let his brothers near him when they are ill. Is there any other route to see a specialist? I feel they have no idea what they're talking about as told me the IgM was the last antibody to be released during an illness (as his IgM was the same when he had strep as when he was perfectly well...)

Any advice or guidance would be appreciated. Or even just a poke and being told I'm overreacting....

Thanks in advance,

Susan]]> Oscar's Mummy General Discussion Sun, 25 Jul 2010 21:48:59 +0100 http://www.pia.org.uk/forum99849144/read.php?1,33264,33264#msg-33264 http://www.pia.org.uk/forum99849144/read.php?1,33264,33264#msg-33264
Thought I would post an update for those who are interested, although most of you already know as I do post most updates on facebook.

Its been a mixed few months as we found out in April that Josh's engraftment was starting to slip. The transplant he had was reduced intensity so it didn't kill his old immune system, just suppressed it as his old and new immune system can work together , as for his condition to be classed as cured the graft needs to be 20% or higher. Anyway the graft continued to slip and reached 53% when G.O.S.H decided to give him a donor lymphocyte infusion as they really didn't want to see it fall any further just in case.... He had his donor lymphocyte infusion or bone marrow top up on July 7th so we just have to wait and see if it helps. The engraftments test they took before the infusion showed his graft had gone back up a little to 62% which is a relief so now just need to see what happens next.

We also spent 14 days in hospital in June with a central line infection which was pretty scary, and Josh being the rare boy he is, had to have a rare infection not normally found in a central line..... but at least they found out what it was and were able to treat it.

So we are still on that rollercoaster ride, he is still on 9 different types of meds, still has his hickman (central) line and NG tube..... but fingers crossed that his new immune system will start to work and we can be a family who can go places again.

In himself Josh as the moment is very well, very energetic and I guess what you would call a typical two year old, into everything.

Love and hugs to all, and can you please keep everything crossed that his engraftement continues to go back up a little further...... we were told once we reach a year post transplant that whatever the engraftment is at, will be where it stays.

Love
Susan mum to Josh age 2, 8 months post BMT for XHIM / Neutropenia.]]> susied General Discussion Wed, 28 Jul 2010 18:46:14 +0100 http://www.pia.org.uk/forum99849144/read.php?1,33258,33258#msg-33258 http://www.pia.org.uk/forum99849144/read.php?1,33258,33258#msg-33258 Susan McHenry General Discussion Fri, 13 Aug 2010 02:34:14 +0100 http://www.pia.org.uk/forum99849144/read.php?1,33252,33252#msg-33252 http://www.pia.org.uk/forum99849144/read.php?1,33252,33252#msg-33252
However I ended up getting so ill the nurse said due to the dr the previous night ignoring my tachycardia etc (pulse 131, blood pressure 89/64, temp 38) - he did give me antibiotics, but they didn't help enough quick enough. It took several calls for me to even get an out of hrs apt - told my temperature not that high (it went up to 38.8, when it only got to 37.4 with pneumonia!) and as it was only a sore throat, didn't need an apt.

I never know when to get an apt and it was only as Tue wore on I realised I needed medication and had none at home, and didn't want to wait till Wed, miss work etc on Wed. As it happened I missed work and ended up in hospital for 4 nights, with an outpatient follow-up. ENT ward were great with my observations etc, iv antibiotics etc. Recently diagnosed coeliac and they said the gut doesn't absorb oral meds as well as iv, and I feel much better now.

So - any tips on when you contact dr's? Or when as an adult you need iv instead of oral medication? Or how to even get an out of hours appointment when they say you don't need one as your levels are not that bad (temp etc)? I would rather avoid an ambulance and hospital trip again if I can!]]> Keziah General Discussion Sun, 15 Aug 2010 12:29:46 +0100 http://www.pia.org.uk/forum99849144/read.php?1,33245,33245#msg-33245 http://www.pia.org.uk/forum99849144/read.php?1,33245,33245#msg-33245 sandi General Discussion Mon, 19 Jul 2010 00:55:44 +0100 http://www.pia.org.uk/forum99849144/read.php?1,33237,33237#msg-33237 http://www.pia.org.uk/forum99849144/read.php?1,33237,33237#msg-33237
As Ive mentioned, Patient Services Incorporated (www.uneedpsi.org) has a grant program to assist patients of a selected few rare disorders with the cost of insurance premium, including PIDs. (there is some copayment assistance for so other disorders).

On Thursday, I got the call that I have been approved for THREE years of assistance. They are going to reimburse me for the out of pocket cost to buy my insurance, including for my dependents, up to $13k a year. (In my case, it costs me $65/week to carry myself and my daughter through my employer). After 3 years, I am eligible to reapply after 1 year of no assistance from them.

I continue to encourage other Americans to apply, obviously. There is also a similar program through NORD, but you can only receive one or the other.

YAY!

Lora]]> mitchellle General Discussion Mon, 26 Jul 2010 21:29:45 +0100 http://www.pia.org.uk/forum99849144/read.php?1,33219,33219#msg-33219 http://www.pia.org.uk/forum99849144/read.php?1,33219,33219#msg-33219 Madisons just been put on a prophylaactic abx at long last but its aniseed flavoured, its gonna be a tough 3 months trying to get her to swallow that every night.
Whatever happened to banana flavoured?

OK....vent over lol]]> emn2111 General Discussion Sat, 17 Jul 2010 00:59:29 +0100 http://www.pia.org.uk/forum99849144/read.php?1,33218,33218#msg-33218 http://www.pia.org.uk/forum99849144/read.php?1,33218,33218#msg-33218
I must have overdone it. I was probably akin to a puppy running around the house with excitement until collapsing in fatigue. I was just so happy to feel GOOD! No headache, no body aches- I haven't felt so well in months. Really, if all I'll have is a swollen and tender tummy for 2 days a week, I'll take it! I've also heard it gets better at the injection sites over time? Is that true for anyone?

We'll probably try a different area on Monday, as the nurse said the swelling I experienced was too much. But then I understand that you're supposed to stick to the same area?

Any advice would be welcome! Thanks, Kate]]> CVIDkatie General Discussion Fri, 13 Aug 2010 02:17:33 +0100 http://www.pia.org.uk/forum99849144/read.php?1,33215,33215#msg-33215 http://www.pia.org.uk/forum99849144/read.php?1,33215,33215#msg-33215 I just out about a new PID magazine for kids from the same company that made the IGIV bear. The link is: [www.mygardian.com].

I'm not sure if this would work for our friends in the UK or not, but I wanted to share just in case.

Rachel mom to Mark 9 CVID]]> marksmom General Discussion Fri, 16 Jul 2010 14:37:31 +0100 http://www.pia.org.uk/forum99849144/read.php?1,33209,33209#msg-33209 http://www.pia.org.uk/forum99849144/read.php?1,33209,33209#msg-33209
Just wondering if anyone had heard of or had any experience with biochemical screening?

A friend recommended I have this done to find out if I have any allergies/intolerances amongst other things. I know nothing about it and it seems quite pricey, but, my friend swears by it and says the advice given from it has improved her health greatly.

Also I have a vague memory of my immuno nurse saying patients with C.V.I.D cannot get allergies? I could have made this up though!

Thanks,

Chloe]]> chloe General Discussion Sat, 17 Jul 2010 08:54:25 +0100