GPA - Early Days Diagnosed 2 weeks ago

[Longwilloe]

Hi I'm very new and learning all the time to this condition, I'm on Prednisolone 70mgs per day I have lost 10lbs in weight during that time is this part of the illness. I am eating 5 small meals a day all food groups laying off the harmful foods. Eating fruit, protein, wholemeal bread, vegetables and spring water. Thank you

[Skipper]

Hi. I have had GPA for 10 years now but when diagnosed was given 60mg pred and lost a lot of weight initially. You will soon put it back on, and a lot more with the pred. Keep eating a good diet as you will probably feel ravenous on 70 mg pred. All good wishes to you.

[buster1502]

I was diagnosed may 2016 with GPA had 12 weeks of chemotherapy and 60mg prednisolone per day keep eating as you are the prednisolone will start to put weight on you i have put 4 stone on while on prednisolone have now started losing 1.5 stone as my preds are reduced good luck

[Longwilloe in reply to buster1502]

So good to know that we're on the same page, and you've gone through this part of the journey, I thought healthy eating would help with the inflammation time will tell. I am very lucky to have a supportive family and this support group have been invaluable. Good luck with your ongoing recovery.

[zoe69 Administrator Volunteer Vasculitis UK]

Hi, I have GPA too. Diagnosed more than two years ago. Loosing weight means your vasculitis isn't under control yet. Prednisolone usually makes you craving food and sugar. Be careful...I put on more than 3 stones.

What other treatment are you on? Or will be, since you are newly diagnosed. Do you have organ involvement? What are your symptoms?

Prednisolone on its own is not enough to treat GPA.

Good luck!

[Longwilloe in reply to zoe69]

I have spoken to my rheumatologist that I am seeking a 2nd opinion from Addenbrookes. I have already provided the information to my rheumatologist about the EULAR/ECTRA Recommendations for the management of ANCA-Associated Vasculitis unfortunately he thought I was being "rude", I am not a rude person by nature so my family have said to just leave it to the 2nd opinion doctor who have a vast amount of experience with GPA. 6th-8th February I had 3 x 1g infusions of MethylPrednisolone then 9th February ongoing 70mgs Prednisolone. Calcium/D3 and Naproxin 250mg pain. Had a CT scan no clots in heart or lungs, other results show kidneys and liver good. I need to be careful when walking pain in middle/upper back, chest pain when stressed so staying very calm. The input from you all has been amazing, I've seen stories from people with this condition still in remission for 11 years. My sister and brother in law have bought tickets to go to Manchester in June for my 59th birthday to see Nashville Tour we absolutely love the show.

[zoe69 Administrator Volunteer Vasculitis UK in reply to Longwilloe]

Well your rheumatologist should have talked to you about the treatment before you had to....It is a serious condition so getting the best healthcare is what you aim for.

[Longwilloe in reply to zoe69]

He did but we didn't know about the EULAR/ECTRA recommendations till Keys provided us with that information and I gave it to his nursing team at Kettering General Hospital. I see him on 23rd February. Just waiting on the 2nd opinion now. My husband and I do understand the seriousness and are on tinderhooks, they have had knowledge of my results since December 2016, I've been researching the condition not understanding why they are delaying. I've journalled everything since 4th February when we were given the diagnosis from the Rheumatologist. We've done everything we can. Vasculitis UK have been so helpful totally invaluable advice received. I'll phone Addingbrookes Wednesday before I am due to see the Rheumatologist on 23rd to see if they have decided to take me on.

[Hidden in reply to Longwilloe]

He thought you were rude, I have heard it all now! I can think of a few adjectives for him such as negligent and ill informed.

[Longwilloe in reply to Hidden]

I'm not a rude person Keyes and considering I was having difficulty breathing with my chest at the time and explained to the rheumatologist who called my mobile I asked him to contact my GP's surgery practise to have an update on the recent events because I was having to lie down on the sofa and breath slowly.

[linjoyfrench]

I was on pred for six months and lost weight gradually over that time. It is creeping back up now!

[Longwilloe in reply to linjoyfrench]

It's good to see that there is a balance, did you find it difficult to sleep on pred. I can do little things make some meals, sort out finances filing, use the computer to talk to my friends and family internationally so keeping my mind active and positive looking forward to goals like Nashville. Don't know if it's achieveable but I can see my sister for that weekend anyway even if I am not able to go to the concert.

[linjoyfrench]

Yes, it was really difficult . My husband works nights so in some ways, it was easier to deal with the insomnia . I downloaded restful music from Amazon - mind you the beat of some is definitely not restful!- and played that throughout the night. I refused to let myself get up and made sure I rested until at least 6.00 and then I had a twenty minute afternoon nap - I think it is a yoga position, kneeling in front of a chair with my head on the cushion. I also managed to control my temper by deep breathing accounting to twenty (this worked except when my husband flooded the whole of our ground floor whilst matching tv.Good luck k

[Longwilloe in reply to linjoyfrench]

I completely understand my husband is an early riser for work 5am and if I get up at 3am it breaks his sleep, so I'm very gingerly moving around. I like watching MAGIC my type of music. If I only sleep for 3 hours I'll get up do some journalling and go back to bed and it's working I can get another 3 hours in and de-stress (better out than in) through the journals. I work for the NHS in Mental Health as an medical secretary/administrator.

[Fandi-bro]

I would suggest asking your rheumatologist for additional medicine with prednisone and some tests such as PR3 and Anca to check the intensity.

[Hidden in reply to Fandi-bro]

Longwilloe did and was called " rude " as a result.

You can have ANCA associated Vasculitis and be ANCA negative, it's not all about the ANCA unfortunately.

[Longwilloe in reply to Fandi-bro]

The letter in front of me dated 10th February stated ANCA associated vasculitis (ANA positive, ANCA positive, PR3 191

[Longwilloe in reply to Longwilloe]

I've never done this before provide information of a personal manner but I have been left with no alternative, I am just very lucky that this website has so many informed and supportive contributers. We've had so many queries and I have found this support group to be so very helpful. My family and I truely appreciate all the help and guidance you and this group have provided.

[Hidden in reply to Longwilloe]

Yes, it's a strange parallel universe you are inhabiting at the moment. If it's any consolation it took me 4 years to get a diagnosis and treatment ( I don't have ANCA associated Vasculitis ) and I wrote many similar posts at the time.

I hope you hear from Addenbrookes soon. Did they rule out Lupus ( positive ANA )?

[Longwilloe in reply to Hidden]

Does ANA positive mean Lupus, it's a steep learning curve. Is that as well as Wegener's GPA or instead of. Would that be more beneficial instead of GPA

[Hidden in reply to Longwilloe]

It's a bit complex as you can get cross reactivity of all the different auto antibodies. They call Lupus the " great mimic " as its symptoms can mimic so many other diseases.

I am not sure any of these diseases are better than any other and the treatment can be fairly similar ( immnosupression ). You can also get a form of Vasculitis secondary to Lupus. The main thing is you have a referral Addenbrookes who will hopefully sort it all out ( they see a lot of lupus as well ).

70mg of Prednislone is a massive dose if you don't have threatened organ failure especially following 3 pulses of IV Methylpred.

[Longwilloe in reply to Hidden]

In 2000 I came down with the Staph infection to my lung, in 2002 I contacted my gp because I was having very very painful needles/pins to my right toes, like a nail going through my toes, could this have been Localised Vasculitis. It's a bit like trying to put together all the pieces of a jigsaw.

[Hidden in reply to Longwilloe]

Many of us find that we have a pre ceding infection ( I had 3 bouts of pneumonia and never felt right afterwards ) a few years before becoming unwell.

Usually GPA has a prodome of around 6 months so it's difficult to say. Other forms of Vasculitis can take several years to reveal themselves fully ( eg EGPA and Behcets ).

It's a good idea to write out a timeline of your symptoms, in bullet point form, including anything you think may be relevant. Include things like rashes,ulcers etc.

[Longwilloe in reply to Hidden]

Very lucky there no rashes or ulcers but seeing how these complaints are all piecing together over two doctors surgeries and the workplace.

[Longwilloe in reply to Hidden]

Hi Lynn

Just to keep you up to date I was seen by one of Dr Jayne's team Dr Gulopavin I think I have his name right, anyway he gave me a physical examination and confirmed the diagnosis of GPA and explained to Tony and myself the nature of the condition. There were some changes made to my medication and he has agreed with Dr Das prescribing me Mycophenolate he said if the condition progresses that will leave the option to use a stronger medication. He also said if there are any changes in the condition or new symptoms arise to contact them at Addenbrookes. When I saw Dr Das on the Thursday before Addenbrookes he did say that he would take his guidance from Addenbrookes. I must admit to feeling much more at ease now the team with the more experience is looking after my care. Since 8th February I've been using the Autoimmune Protocol way of eating and it is helping with the joint inflammation among other things, eating protein vegetables and fruit. I'm not hungry and the food is keeping me satisfied.

Thank you so much for your help.

[Vrainbird]

I lost 15kg initially and was on 75mg and now have put it back on and take 25mg a day.

[Vrainbird]

You may have already discussed but I had a The Influenza & Phenomonia Shot and that has assisted me in not getting sick.

[Longwilloe in reply to Vrainbird]

Thanks for the advice yes I've read about keeping up with the flu jabs. Weight wise that was definately a worry I am on the AIP Autoimmune Protocol which is helping.

[Longwilloe in reply to Vrainbird]

I've had the flu jab but not the pneumonia one is that a different one to the flu jab?

[Mal06 in reply to Longwilloe]

Hi yes they are two diff ones. Pneumonia is long lasting but flu have to have every year - usually in autumn. But talk to drs now as we’re still in winter mode!

[Longwilloe]

Thank you so much for your lovely letter I am saddened by your loss.

I have needed to become an active participant as my chief medical caregiver seemed to be unaware of he dangers I have been put under. Luckily I contacted Susan Mills originally who linked me up with John and Keyes then the wider populous of the HealthUnlocked truely caring individuals who have either gone are going throught or have gone through this condition with a loved one.

I have for the last 2 weeks changed my eating pattern, actually my body demanded it I was handing over control to my instincts being totally lost. I am now on the Autoimmune Protecol which is excellent there are still pains but limited. We are going to meet in Scotland a gentleman who has been managing this condition and he has offered to give us some more insight into this condition a bit further down the road. We see Dr Jayne's team on Friday next week and anticipate many questions and answers back and forth.

Thank you so much for your kindness in taking the time to write your letter. I hope your pain lessens with each day.

[Alliand]

It is always important to remember that while on prednisone, methotrexate and the like, you are immunosupressed, and it's quite easy to get any type of infection. You can't live in a bubble, but you can avoid crowded public places, diligent handwashing, avoid waiting areas full of sick people if possible; some people take to wearing face masks when visiting hospitals, clinics, airports, large markets; I did get a very bad cold after 5 months. on Prednisone which became a month + upper respiratory infection.Took very long to be rid of it and knocked me down.

Don't get phobic; just exercise common sense, and know your normal ability to fight infection is impaired by these medications. If you develop a sign of infection, be sure to contact your doctor quickly.

Also, there is a book, "Coping with Prednisone," by Eugenia Zuckerman and Julie Ingelfinger, MD . A very good read.