Am I having a 'Flare' ??

Having just recovered from a week of haemoptysis I then developed excruciating stabbing pains in both knees waking me up at 4am 6/02/13...which I think is the WG and arteriitis not arthritis. I took tramadol & Ibuprofen but it kept coming back lasting till today..could hardly walk as so painful. Think it must be a 'flare'? Seen GP & have been referred to Chest Docs & seeing my Vascy Team 5/03/13..any advice for me? Thanks

[lillylangtree]

That's how I started out. I started taking Singulair and numbness, tingling ensued. But then it got worse and so bad I was crying out in pain. I had never gone to the Doctor. I waited too long, my Doctor was too busy to see me but we called back and told him it was an emergency and that I was in horrible pain in my legs and I that day I couldn't walk (the Doc squeezed me in)so husband took me to my Doctor who was totally baffled because I could no longer stand up. So he sent me to emergency. Thank God I didn't wait another day because God only knows what would have happened. Please get help, I was given high amts of steroids and pain killers and I was almost a goner by then. The steroids were needed to keep me alive so the damage didn't get worse as my eosinophils were 29.+ Did they check your eosinophils? My immune system was attacking me. There is hope though, but now please get help right away, I don't trust Doctors to know this dis-ease. I was diagnosed with Churg strauss vasculitis. That was in May 2007 and I was discharged in July 3 to a convalescent hospital, but hubby took me out and home, I truly thought I was going to die then and didn't want to be a burden on my family.

But the good news is that I got better and even after the foot drop in both feet and paralysis and I could hardly stand with a walker. I can now walk, drive, even run and I am off all drugs since 11/07. Blessings to you, will say a prayer, but it sounds like a flare or exactly what I had and didn't even know I had CS then.

[Regie79]

Hi Sheila,

If you are really concerned with your symptoms and am not seeing your Rheumatologist till the 5th of March. I would then contact you Rheumatologist secretary and explain your symptoms to them.

Paul

[Hidden]

Thanks Lilly for your comments. The pain has settled thank goodness just some discomfort left. I am on steroids and immuno-suppressants (Cell-Cept) there has been talk of changing me to Methotrexate as I seem to keep getting this sort of flare usually behind my left eye. I can imagine the pain is caused by inflamed blocked little blood vessels in my knees cutting off oxygen and nutriments to the surrounding tissues hence the excruciating pain I experienced. I do get fleeting joint pains/stiffness and cramp in fingers and toes which I put down to arthritis but this attack is totally different which is why I am sure it is the WG and arteriitis. Take care and have a good day I'm so glad you recovered after such a frightening experience...vasculitis 'sucks' S&J

[lillylangtree in reply to Hidden]

Thank goodness! Glad that you have it under control, it was so scary for me when that was happening but I was on nothing at the time because I hated going to Doctors and stalled off way too long. I even saw 4 and had terrible headaches and got a massage instead! I thought that would also help with the difficulty walking. I even called emergency and I was told that I was getting ready to have a brain bleed which I knew nothing about! Anyway, these things have to be addressed asap so they dont get worse. It sounds like you are in good hands!!! Take care, blessings (:

[JacquiM Volunteer]

Hi Sheila as you know from my facebook page I have been having bad pains in my feet so much so that I had to rely on Tramadol to ease the pain, at least they allowed me to have a couple of good nights of sleep!!

As Regie as said, if you're symptoms are giving you a lot of concern I would contact your consultant's secretary sweetheart. I so agree with you Sheila ..... Vasculitis sucks

Take care xx

[Kentish_Man]

Hi Sheila,

Both my consultant and my GP have sent me to different pain management clinics. I am now on Morphine patches (BuTrans or life savers as I call them) and they have made life more tolerable. I top up with either non prescription pain killers or liquid morphine depending upon the severity of the pain. The patches last for 1 week and are not intrusive.

[Derek]

An important question? Do you have a direct call line to your vasculitis team? If not you should have. If I have any problem I can call the team who will advise me to either see my GP or go directly to hospital for their help. To contact my team I leave a message on the answering machine before 11 a.m., which is when all calls are checked during weekdays. A call after 11 a.m. is checked the following day. A team member usually calls soon after 11 a.m. to advise accordingly. If necessary, to avoid wasting time, I will be dealt by the team or I will be referred to the appropriate department for an early consultation or fast-tracked. If I can't contact the team for some reason and the symptoms are worrying I would go straight to A&E with my 'latest', regular appointment, hospital consultants letter, which contains my current medical history. On my last visit to A&E in Nov '12 with a flare, I was fast-tracked in 15 minutes.

It would be interesting to know if this level of support is experienced by most vasculitis patients or is the exception.

[Hidden in reply to Derek]

Hi Derek, thanks for your reply. I don't have a contact number to ring but I can ring the Consultant's secretary so I shall ask next clinic visit but have been told if I did have problems I could just tag onto the next available clinic. I managed to see my GP who was great she too agreed the knee pain was Angiitis (I said arteriitis earlier!!) but it had settled by the time of my visit. She has referred me urgently to the Chest Docs and I had an urgent chest X-ray (which showed shadowing cos I took a peek) she also changed my anti-depressant as I was feeling really down and my previous drug did not seem to be helping. So hopefully everything will improve.

[Derek]

Great to know you are getting things sorted Sheila. Keep focusing on the positives, sounds like you are doing well. It's all about keeping our teams' informed of changes to health when it happens so we don't have to worry unduly.