exercise

[ingemlb]

Hi JeanMarie. Funny you should mention that. They sent me on Monday for an Ultrasound of the shoulder, the foot and the entire leg. The entire leg was to rule out blood clots. Well the main problem was the pain in the foot radiating up the leg. So the Radiologist was so fixated on the blood clot he forgot the foot. He did the shoulder and found inflamed joint and tendon but reported absolutely nothing about the foot or ankle or knee!! So I thought they were going to send me back for another one but instead yesterday my Prednisolone was increased from 25 to 40mg. Woke up yesterday morning with pain in the wrist as well. I had a bad afternoon yesterday. The pain had been fairly consistent. Occasionally I got a bit of relief during the night but as soon as I started walking it kicked it off again. Then yesterday afternoon (took the Pred at lunchtime) it was quite bad lying in bed. But by late at night (midnight) I got up to make a cup of herbal tea and found that I could actually walk without a limp. I still felt the pain in the foot but it was definitely improved. This morning I took another walk to the kitchen and was even more improved. Felt no pain during the night. SOO..... the Prednisoline seems to be doing it's thing very quickly in my case. It's much the same when I was first put on Prednisolone. I reacted extremely fast and inflammation started to retreat within a day. Within 2 days my wrists and hands almost looked normal and I could type for long periods without any pain at all. Then other joints started to clear up. (Mind you was still on regular pain meds and when it came close to taking the dose the pains would flare up). Then 2 weeks later they reduced the Pred to 20 and I think this was the mistake.
Anyway HIP HIP HURRAY seeing some improvements so I think we are on the right track. But I won't celebrate just yet as it has been coming and going however the pain on walking has been consistent and severe since the weekend Inge.

[MikeG-2012]

It really sounds like your docs need to get on a plan on what the pred needs to be for the long term. Constantly changing the dose is not going to do much except make your body revolt and have all kinds of problems. After my diagnosis, I was on a 6 month tapering of high-dose pred, starting at 60mg per day, and down to 10mg over the course of the 6 months. That kept the traveling rheumatoid issues and swelling gone for good. I don't have any of those issues now, as long as the disease stays manageable and in drug induced remission.

[ingemlb]

Thanks Mike. I think they are very much aware of that. I was only diagnosed a week ago with rather confusing symptoms. Because all my vital organs are in such a good shape we all thought originally the WG had just hit and could get away with low dose treatment. I was also scared stiff of the idea of prednisolone and methotraxate so I guess they kept thst in mind too. But now its becoming clearer that this has been going on for a long time. I myself had my own theories as to what protected my organs all these years but thats a whole new topic.
So considering none of these specialists here had ever met me before I landed in emergency 4 weeks ago and presented with very nasty vasculitis but nearly every other test brought back unexpected results I think they have done a good job getting this far. From what I am learning here diagnosis can be very slow.
When I first arrived in the forum last week I was in total panic as I had read how nasty WG can be so was firing lots if questions. Thanks to the members here I have learnt to calm down. I was so upset that I had a nervous breakdown and they have called on a psychiatrist to see me today which can't hurt. Our family has had a huge amount of trauma all of 2013 and 2 days before Christmas we buried Mum. Since then I became increasingly more ill but took a few weeks ti seek help and then ti discover about thus disease did nothing to cheer me up.
I am now sure we are on the right track and have to trust these specialists who have a very good reputation to sort it out for me . calm cool and collected. The new me lol Inge

[MikeG-2012]

Thanks Mike. I think they are very much aware of that. ...
I am now sure we are on the right track and have to trust these specialists who have a very good reputation to sort it out for me . calm cool and collected. The new me lol Inge

You're welcome. I was just looking out for one of the family! (-8

I am so glad you are confident in the docs.

I went through the start of my journey without this forum and the good people on it. I was sick for about 4 years prior to diagnosis, and for me, it was a HUGE RELIEF just to finally know what the ____ I had!

[ingemlb]

Yes that must have been awful. I spent 7 years on another treatmen and when I accumulated new problems the last 4 years I just hung in there telling myself they will go away but deep down wondering what the hell was going on. So init I felt this immense relief to have a name and reason for all these things. But that was when I was too zonked out to study the nastiness of WG.
Thanks for caring Mike. I keep telling everyone how helpful this forum has been inge

[annekat]

The only good thing about having Wegs is getting to be on this forum!

[windchime]

Inge, I'm sorry for the loss of your Mum then all the disease drama. It does explain your panic a bit better. Glad you've calmed down and it never hurts to see a professional. You are still dealing with your grief over the loss of your Mum and then this.

I was at my first visit with my pulmy a year ago April when I got the call my Dad had passed. So I too was dealing with flare and grief. I understand where you are coming from. Hugs to you.

[ingemlb]

Thank you Cindy. Yes you would understand Just saw the psychiatrist who was actually kind to squeeze me in and didn't need very long to sum up the situation. He is blaming it mainly on the prednisolone aggravating all tbe bottled up stress and grief. He thought I appeared racy. Which I couldn't dispute and managed to notice I am sleep deprived so starti g me on some melatonin and regular (for now) diazapam. I find the valium to work well for me and usually have it on standby when I find myself heading for an anxiety or panic attack. So maybe taking both for a few days will let me catch up on sleep and stabilise. He didn't think I was depressed, more mood swings which sounds about right as these episodes seem to wash over me without control. Inge

[windchime]

I feel the calmer you already. I think you will be able to handle things better. Good you had an understanding doc that was willing to understand and help. Hugs to you.

[annekat]

Inge and Cindy, my dad died right around the time of my dx, I was too sick to go see him, and I didn't know what I had until about a month after he passed away. So my feelings about getting Wegs are all jumbled up with my feelings about losing my dad, and the grief and depression I sometimes feel are for both. Since the disease is at the forefront of what I'm dealing with every day, the need to work through the loss of my dad gets pushed to the background. I know I haven't properly grieved for him and someday it will hit me like a ton of bricks. Right now, I'm having less severe problems with Wegs than either of you, I think. But I just wanted to empathize with getting hit with these two very different but equally life-changing events all at once.

Inge, I'm so glad you are feeling less afraid and more calm and collected since coming on the forum and learning more about what you have.