Medication side effects

Allergies, blood and immune system
1

I was diagnosed with WG 4 years ago after suffering a catalogue of symtoms 9 months. My employer the DWP ( there's a joke ) even threatened to sack me after their occupational health doctor said there was nothing wrong with me. I was finally admitted to hospital coughing up blood and showing signs of kidney failure. After a broncoscopy revealed the cause I was put on ( as quoted by one consultant ) industrial levels of medication. 10 months on cyclophosomide and prednisolone followed by azathioprine and prednisolone pushed the WG into remission but caused hair loss, massive bruising, easy bleeding on the slightest knock, huge weight gain, moon face, a lump below my neck termed a buffalo hump and waves of crashing exhaustion. I am now showing sub-clinical hypothyroidism and pre-diabetes as afurther long term effect of the steroid

I fully appreciate that I am lucky to still be here but more feedback from the doctors would be welcome. Adults get WG and as such are old enough to be given the full picture.

My GPs were unable to connect the dots and form a diagnosis and even the consultant seems to be flying by the seat of his pants. Not everyone has a positive ANCA test.

We all know that lack of treatment will be fatal but I think fore-warned is fore-armed and would stop sufferers panicing at the next new symptom.

WG and the side effects of meds is survivable so I hope any info I've provided will be a little reassurance to anyone newly diagnosed.

Good luck to you all

2

Hi Richard

I read your posting with intrest, I had very similar symptoms. I have already posted my \"potted history\" on this site,back in August, so i will not repeat it.

I was in remmision, upto three weeks ago and then I became very tired and felt run down, as I always appear to have a cold I thought nothing of it.

I then went to the Consultant who took his pints of blood. I am now told that my ANCAS are going back up, they were zero. So they are wacking me with more Steriods-Oh what fun.

Intresting to read you were, or are, with the DWP I have had a great time with them. They do not seem to know anything about the illness, even though they have had letters from my Doctor(s) I was sent for a DWP medical and that was a farse.

I ask for a copy of the results which show I have difficulty dealing with stairs and getting out of bed but in the next statement it says \"Can walk 400 Mtrs, to be honest the document is shot through with rubbish.

Funny though after the medical they have given me two years grace to see if my condition improves and said, and I quote \"this person can not undertake his work\" but they offer no support.

Maybe you would like to discuss this further? My email is: ****.

Cheers

Steve

(Sorry but Patient Admin have removed either a telephone number, an email address, a postal address and or web address, from this posting, as it is the policy of Patient UK not to publish these on this forum.

If you wish to communicate directly with people, you should register, for free, with the forum (click Register in the menu list below the green banner above). You and other registered members will then be able to communicate with each other via Private Messaging (PM) or e-mail.)

3

I was very interested to read the comments and experiences from Richard63 and SteveG11. It all sounded so familiar unfortunately.

As far as the DWP/DLA lot are concerned I've come to expect having the 'phone disconected before I've given any details and the Doctor fron the DLA actually quoted from that bible of this condition - Wikipedia - in his assessment. I also had the same rigmarole with walkin abilities.

I eventually went to tribunal with the help of my local advisor and the independant review expressed the dismay at the way I had been treated.

So Richard and Steve, persevere and enjoy what ability you have left. Remember, there is a light at the end of the tunnel even if it is the oncoming train.

All the best

Brian

4

Hello Brain Damage

I do hope the name you have used is not another symptom of WG!!!!!!

Thanks for your words of encouragment in the fight for the DWP to accept recognition of WG. I will continue the fight, as I have just been rejected out of hand by the DLA and informed \"in so many words\" my condition is not a problem.

I have a transcript of the , so called medical report, from the DWP in which I am told I have no Vascular, Lung or muscles problems,all of which I was not tested for, in fact I scored top marks (for the lack of these conditions) Funny though the Doctor (I use that title very loosely) did not know what WG was and had a 2 minute phone call to a collegue to find out!!!!!

As WG is a Vascular condition how the hell can I not have symptoms. After reading the report in depth it confirms, that in the eyes of the state, WG is not as common as a \"bad back\",\" being very over weight\" or \"depression\" and as the DWP quack said \"it is not in my DWP book\"

For my own part I have responded to the rejection with a very detailed letter and a copy letter from my Consultant, who is very annoyed that the DWP are so limited in their view. If no response to my letter I intend to move on to a tribunal.

Cheers for now

Steve

5

Hi guys glad but sad to read your comments glad as im not alone in dwp not accepting that im ill sad for your cases with them, i have been fortunte to keep working but sometimes its too much so i filled in the forms for help and to my horror they just dismissed me as not been that ill for any kind of help maybe if they could live a week with what we suffer they would understand