Bleeding

[Barbara N]

They are trying to taper my pred; lowering me 5mgs a week put when I went from 45mgs to 40 I started to bleed from everywhere. My skin is like paper and bleeds if you just touch it. Is 5mgs a week to fast to come down? I also am having muscle cramps in my feet and calves and cramps in my stomach. For the first time today I felt scared because I didn't know what was happening to me. I just got out of hospital for coma and bladder infection. I think I still have the infection. I have to wait until next Monday to see the WG man. Any advice?

[me2]

Hi Barbara,
I'm certainly no expert but I would not think that 5mg per week is too fast to come down at that level. I would guess that the bleeding is related to being at such a high level rather than from reducing from it.
From what I know , it is the prednisone that makes us more prone to bleeding rather than reducing from it. Of course it gets more complicated when we don't know other things that might be going on that would also contribute to bleeding.
I can say from my own experience that I bleed much easier at high doses of prednisone than when I have been able to stay at a low dose for a period of time. We are stuck between the benifits of prednisone and the problems of continued prednisone usage.
If you think you still have the infection are you still taking antibiotics for it? I am currently taking Cipro for ongoing infection in my sinuses. I have this infection in part due to structural damage from thirty years of WG and probably partly due to Rituxan and prednisone use.
I hope you are doing better soon.

[Alysia]

Hi Barbara,
I am sorry. I don't understand what is happenning to you but I think that you should not wait untill next week. I suggest that you call your doc asap.
I am sending you gentle hugs and praying. take care and update us :hug1:

[Pete]

Hi Barbara,

First of all, please call your doc ASAP and get in earlier if you can. You may other issues that need immediate attention.

The bleeding of your skin is most likely from a combination of factors. High dose pred will aggravate the condition, but our skin does thin as we age with resultant ease of bleeding and bruising.

Your 5 mg/week taper is the same as mine. I'm now at 30 after starting down from 60. Maybe you should go back up to 45 until you hear from your doc.

Good luck!

[pberggren1]

Barbara, your skin sounds severely damaged by the pred over the years. What do your new docs say to do now?

[JeanMarie]

I agree with everyone else here--it can't do any harm to call your doctor today

[Texastatoogal]

Barbara,
I will pray for you.

[Debbie C]

Oh my Barbara,I feel so bad for you. You just don't seem to get a break. I agree with the others who say you need to call your dr. and see what he says. Are able to get in touch with those 2 drs. you meet when you were in the hosp. that knew about wg. or even that country dr. that helps you.Please don't wait until Monday can you go into the e.r.
I am sending my prayers your way:hug2:

[Barbara N]

Thank you aLL for your encouragement and help. One thing you don't understand is that this is Spain and here we have a Fiesta for everything. this weekend was a 4 day fiesta so the only hospital staff you would get would be the maintenance people. I meet these WG doctors on Monday. From now until after the Three kings on the 6th of January we are basically in one giant fiesta. I have spent 2 Christmases in hospital here and they may as well send you home because no one is here they are all on holiday. I have just finished my course of antibiotics for the bladder infection but I know it has not completely gone away. at this time of year you just get substitute doctors who know nothing about your case and are likely to screw up your medication.. Friday I go down to 35 mgs. Are any of you on dialysis? I would like a first hand explanation of the whole procedure and how often and how long you are on the machine, what it is like having the shunt put in. It scares the s.........t out of me and to think it is for the rest of your life with no hope of improvement. Thanks again to all of you, Barbara

[annekat]

Barbara, the last thing you need is a month of fiestas and no suitable docs to look after you! It seems very strange that a country or culture would allow good medical care to be cut off so that everyone can celebrate! I hope that the WG docs you meet next week will be just what you need and maybe will be serious enough about your case to forgo some fiesta time. I can't comment much on the bleeding because I don't have that, but am sure the others above know what they are talking about. I did just notice a more prominent than usual WG rash has appeared on my forearm sometime today. I guess it is increased disease activity from a lot of stress the last few days. I am also trying to taper pred at the low end of the range. The red dots do seem like bleeding under the skin, and I wonder if it is related in any way to the kind of bleeding you are having. Probably not; they sound too different.

[Alysia]

Thank you aLL for your encouragement and help. One thing you don't understand is that this is Spain and here we have a Fiesta for everything. this weekend was a 4 day fiesta so the only hospital staff you would get would be the maintenance people. I meet these WG doctors on Monday. From now until after the Three kings on the 6th of January we are basically in one giant fiesta. I have spent 2 Christmases in hospital here and they may as well send you home because no one is here they are all on holiday. I have just finished my course of antibiotics for the bladder infection but I know it has not completely gone away. at this time of year you just get substitute doctors who know nothing about your case and are likely to screw up your medication.. Friday I go down to 35 mgs. Are any of you on dialysis? I would like a first hand explanation of the whole procedure and how often and how long you are on the machine, what it is like having the shunt put in. It scares the s.........t out of me and to think it is for the rest of your life with no hope of improvement. Thanks again to all of you, Barbara

Hi Barbara.
when you will finally meet your docs, one of the things to insist on, is the continuity of their caring for you, no matter if there is fiesta or not.
what antibiotics did you take for the uti ? I tried 3-4 types untill I found (I hope so) the one that helps. mine is called macro-dantin or nitrofurantoin.
take care and update us. I am sending you my love and my praying.

[Alysia]

Barbara, the last thing you need is a month of fiestas and no suitable docs to look after you! It seems very strange that a country or culture would allow good medical care to be cut off so that everyone can celebrate! I hope that the WG docs you meet next week will be just what you need and maybe will be serious enough about your case to forgo some fiesta time. I can't comment much on the bleeding because I don't have that, but am sure the others above know what they are talking about. I did just notice a more prominent than usual WG rash has appeared on my forearm sometime today. I guess it is increased disease activity from a lot of stress the last few days. I am also trying to taper pred at the low end of the range. The red dots do seem like bleeding under the skin, and I wonder if it is related in any way to the kind of bleeding you are having. Probably not; they sound too different.

Hi Anne,
I didn't see yet if you post about it in a new thread, but if not, please do it.
I don't know much about it. but prob others will know better.
is it wg-related ? maybe it is a wound from something ?
please write more. I am worried about you.

[annekat]

Oh, Alysia, this is a little rash that some of us get on our forearms or maybe our legs when we are stressed or maybe when tapering pred. It is just a little collection of small red dots, and they usually go away after a couple of days. Mine are already fading, but I was a bit alarmed because last night I noticed them all of a sudden and they seemed darker and more numerous than usual. Today they look much more normal, and I am not worried. I have read of several others on here who get these dots, though not everyone does, I guess. They are nothing like the severe purpura rash that we see pictures of, and I'm sure they are nothing like the bleeding that Barbara is experiencing. They are just a little reminder that I still have Wegs. Thanks for worrying about me, but please put your mind at ease.

I think if you search "Wegs rash" or "red dots forearms" you might find some posts about this.

[Alysia]

Oh, Alysia, this is a little rash that some of us get on our forearms or maybe our legs when we are stressed or maybe when tapering pred. It is just a little collection of small red dots, and they usually go away after a couple of days. Mine are already fading, but I was a bit alarmed because last night I noticed them all of a sudden and they seemed darker and more numerous than usual. Today they look much more normal, and I am not worried. I have read of several others on here who get these dots, though not everyone does, I guess. They are nothing like the severe purpura rash that we see pictures of, and I'm sure they are nothing like the bleeding that Barbara is experiencing. They are just a little reminder that I still have Wegs. Thanks for worrying about me, but please put your mind at ease.

whewww... thanks God :smile:

[Texastatoogal]

Barbara,
Are you any better? You have been on my mind.