Dr Problems. Please help

Hey everyone. So my last post was about how long it takes to get into a specialist. It's been about two weeks and I have gone into my Hema's clinic twice just for cbc's. My most recent count was 105k, so she dropped me from 60 mg of pred down to 50 mg. (keep in mind I still haven't met my Dr. I have my first visit with her next Monday)

For the last 3 days I have had a constant headache that borders migraine at times. I have been nauseated to the point where I can't eat or drink. I have started getting dizzy,shaky,and severe muscle cramps. . It's effecting my sleep, work, and day to day activities. I called my Dr's office today and spoke with a nurse who just dismissed me. She told me that I was very lucky the Pred was working for me because they have another little girl who is having to have surgery in a few days and everyone goes through this reaction so I just have to be patient and get used to it. Now, I promise when I say she was very short and acting like I was wasting her time with my questions. I am very concerned about these reactions. I have been on the Pred since March 8th and it hasn't bothered me physically like this. The dizziness worries me the most because I watch my 4 year old during the day and I refuse to leave the house while this is going on.

Am I just being over concerned about these issues? I understand being on Prednisone is no easy task, but I don't know how long I can emotionally and physically handle these side effects. I get to see my Dr this coming Monday for the first time, but a piece of me wants to start looking for a new specialist. Am I overreacting? Please any advice would be useful.

It's possible that your symptoms could be related to dropping the prednisone. I might try halving the drop (taking 55 instead of 50 or 60) and see if I feel better. But those symptoms could be any number of things so don't feel comfortable saying you should watch and wait - you'll have to decide. If things aren't getting worse, maybe you could wait until your dr. appointment. If tapering the pred slower helps, that's probably what is going on. You haven't been on prednisone that long but maybe that's it.
Erica

Thank you. I think it is the dropping of Pred. It's disappointing when I call the Dr and ask for help and they just seem to not be too concerned. It makes me second guess myself. If they aren't too concerned then why am I?

We hear some really terrible doctor stories here (and nurse). Your story is a good example of a terrible employee. Luckily we also hear good doctor stories. The nurse at my hematologist is absolutely wonderful and got me through some bad stuff.
Erica

My hematologist is wonderful and so is her staff. When I call with any concern I get a call back within the hour. If anyone in Tampa/Clearwater area is in need of a great MD let me know.


Debbie D

I have been taking the high doses of prednisone and tapering for close to ten years now.
I usually get a severe headache , night sweats, muscle aches and joint swelling as I taper.
Are there any other hemotologist in your area? If your not comfortable with them look around as having one you can talk to and get a response from quickly is very important. :sick:

Brittany,
I'm sorry you're feeling poorly and having to deal with an inconsiderate doctor's office also. Maybe you can see how the hematologist is on Monday and decide from there whether or not you want to change. I agree with others that you want to have an understanding, responsive doctor and it's important that the nurses and other staff are helpful as well. My son has had ITP for over 9 years. We took him to one practice for about the first 5 years. We loved a couple of the doctors and didn't love a couple, but it was the office staff that caused us to change practices eventually. A few of the employees were rude and not at all caring, so we left. I guess you'll never find a practice where you like everyone, but you should definitely feel comfortable calling and talking to someone. Especially in the beginning, when you're going to have a lot of questions and concerns. Anyway - maybe you caught the person on a bad day and you'll like the practice better on Monday. In the meantime, maybe see what your options are in terms of another hematologist.

Hang in there - and I hope you're feeling better soon.

Brittany, I think the hardest part of this ITP thing is dealing with the doctors part especially for newcomers like you and I.
I am trying to read as much as I can especially on this board so I can learn and be confident when dealing with doctors and medical staff. The people on here that have had a lot of posts all seem so confident and I am thinking that this is the secret to all this. I am slowly learning to be a bit pushy and maybe this is something you could try. I have also decided that just because someone works in drs office they don't have the right to treat you badly.
Hang in there things will get better and don't let these people make you feel bad about yourself.

My Hema is a sweetheart!Prednisone works very good for me, but I told her that I don't want them as i hate all the side effects of it. So she is now not even thinking to prescribe me that. I was given IvIg instead.I love my Hema...:kiss: :kiss: :kiss:

yea, it could be from the drop in pred, I had some bad side effects coming off and they were quite scary, I was told I looked like I was having withdrawals from heroin. I think that if you are worried that you make sure that ur docs listen to you, it shouldnt matter whats happening with another patient. I had to try and make it clear to my docs that I also had a life to live and responsibilities. I think docs sometimes dont see past illnesses and think that treating it is the most important thing instead of looking at the whole picture.

My first thought is that you should have your potassium checked. Prednisone can lower potassium, and I have had those exact symptoms when mine has been low. It can also be the result of the Prednisone taper, but I'm betting you have something else going on as well.

Start eating bananas and drink Gatorade. That may help, but you should also have your potassium checked.