steroid tapering experience, advice please

My count yesterday was 79, which is similar to that two weeks ago after I came off steroids completely. My doctor and I are happy with it. It seems that my count has stayed stable at safe range. I heard that some get crash 6 weeks after coming off steroids. Hopefully my situation would be stable.

I haven't got withdrawal symptom. I felt exhausted for some days. I don't know if it is because of withdrawal or just my usual response. don't know if the withdrawal symptom would appear weeks after off steroids.

Lori, your counts sound good. I would not worry about it at the moment. Even dropping to 50 would be fine. any count above 30 would be fine with no need for treatment. Also human body needs time to recover its function properly. up and down is also normal.

Florence,
That's great your counts are staying stable. The exhaustion can be from steroid withdrawal and can last for weeks after you are off.

dru wrote: Florence,
That's great your counts are staying stable. The exhaustion can be from steroid withdrawal and can last for weeks after you are off.

Hi Dru!

Jeffrey

Yay Florence! I'm glad your counts are stable off the prednisone.

Time is ticking until Friday for another test and to see what hema may or may not recommend. I'm going to be prepared this time with specific questions, hopefully they will still be high enough that I won't need them

Primary care doctor visit after that as she wanted to know if hema tested for TTP (oh my...another term to research) as still abdominal pain after textbook gall bladder surgery last May. Geez, once these folks get a hold of you they never let go (LOL).

Slowly the weather is warming up and spent some much needed time today out in the fresh air cleaning the dead stuff out off the flower beds...summer is on the way and time to watch all those energetic people run in the Boston marathon tomorrow.

Hi Jeffrey, hope you are getting some running in. I watched part of the Boston marathon, made me tired just watching.

Appointment yesterday with hema was promising...no way TTP and counts still at 128 after being off prednisone for a month.

Got B-12 shot to pump me up. He decided that shot was better than daily pills at this point as he wouldn't know how much B-12 my body was absorbing versus knowing that they overload me with the shot.

Safe for another month!

Sad about the marathon but not going to keep us New Englanders down. Love and support to all those families out there with loved ones injured or that passed away way too soon.

Good news on your counts Lori!

Yes,it was sad and difficult around here last week.

Hello everyone. I hadn't had blood test for 5 weeks during which I had been on a long journey. Today I had blood test and the counts are 111. It seems that my situation stays stable after slow tapering this time.

That is great! I hope they continue to hold! I hope you are feeling less exhausted!

Florence, glad to hear that! It sounds like you are doing good. I, too, hope they continue to hold!

Great news Florence!

Hi Florence, I've been hesitant to post my son's steroid tapering experiences because I don't want to discourage anyone. Every one is different and we chose to stick with what was working. My son started on Prednisone for Hemolytic Anemia at age 7. They tapered over 4 weeks and his Hgb dropped. He went back on and tapered over 5 months down to 5 mg every other day. His platelets dropped to 10 within two weeks of stopping it and he was diagnosed with Evan's Syndrome. We then slowly tapered over 6 and 1/2 YEARS from 90 mg a day to 2.5 mg every other day. We had to go back up at times when his Hgb went below 10. He was on 15 mg or less every other day for most of the time and had no side effects. Again his platelets which had been above 100 the whole time dropped to 10 when we finally stopped. Back on for 8 1/2 more years. I took him to 4 other hematologists for consults and they didn't recommend anything else as long as the prednisone was working. He grew to almost 6 feet tall, 190 pounds and achieved a third degree black belt in karate through all of this. To briefly finish his story : Off pred. 1 and 1/2 years ; back on 1 and 1/2 years ; Off for 3 and 1/2 years after Rituxan; Back on until last week. He received Rituxan again this April. I'm praying for good counts next week. I'm so glad you are doing well Florence. Joan

Joan,

Thank you so much for posting this. It was so encouraging to me to see how your son has thrived and grown up with this diagnosis. I am an adult who was diagnosed with hemolytic anemia in 1999, was on steroids for months and had a splenectomy-was in remission from it until last week. Meantime I developed ITP in 2005 and have had prednisone that works temporarily and rituxan that gave me a 4 1/2 year remission from ITP.

I am back on prednisone 30mg and suspect I will have to stay on it and maybe try rituxan again also. I was feeling a bit discouraged last week when I got the hemolytic anemia relapse so am trying to stay positive. Good luck with your son's counts next week.

Dru

Thanks Joan for the info. It seems that your son has more complicated case than me. And as dru said, it was encouraging to see your son grown up so well with this.

I am sorry to hear that you are back on steroids, dru. Do stay positive and things would get better.

I am now worried about the side effect of steroids on my bones. Maybe I worry too much. But according to what i know from the recovered patients of SARS, some of them have serious problems with their bones, after high dose of steroids treatment for SARS. some cannot even walk. I took high dose since the beginning of the ITP for twice, and had been on steriods for a long time. I wonder if anyone who received long-term steroids treatment for ITP has the problem.

Florence,

I am taking fosamax weekly and calcium and vit D daily. Those can help at least a little. Do you take anything, or have you talked to your dr about this.

Thanks for the encouraging words, I'm doing good with staying busy and positive.

I'm having bone problems from steroids. It took a long time, but it did catch up with me. I knew it would eventually.

I take Vitamin D...not sure how much it helps. I have high dose prescription because my level is low and it's been hard to keep it up.

I was on and off of steroids during my ITP bout in 1998 to 2003. AT that point, I went to low dose for 8 years straight for Lupus (5 to 15 mg's) and started with fractures and bone degeneration last year. We keep trying steroid sparing medications but I end up with problems from them too and have to keep stopping them.

Sandi,

Did you ever take Fosomax or another bisphosphonate, or would that be contraindicated because of your lupus and RA? I saw this in the Blood Journal, they were talking about treating AIHA, not ITP, but it would be the same for anyone who needs long term steroid therapy (?)

All patients on steroid therapy will receive bisphosphonates, vitamin D, and calcium from the beginning according to the recommendation of the American College of Rheumatology.

No, I haven't taken any of those. They really scare me. My Mom has been trying those and having so many problems with every single one. The side effects can be just as bad as all of the drugs I'm on now. She's worse off now than she was before.

I've been reading that Vitamin D and Magnesium are very good for bones, and that calcium isn't as necessary as was once thought and can even cause problems. My calcium levels have been good, but Vitamin D and Magnesium have not. I get calcium anyway with all of the Tums I take all the time.

I had been on Fosamax but asked to be taken off it because of one of the side effects I had heard about.

Been a few weeks, so nice to catch up with reading the posts. Great news Florence on your count staying up there. My appointment yesterday went well as slow taper seemed to work and count still at 128.

Doc decided that was a fine level and probably my normal. So I won't have to go back for another check until August unless I start seeing any symptoms. He also decided that I can now take B-12 pills daily versus having the injection monthly.

Prednisone has done a number on my vitamin D levels as they were just fine before. Last check was that I was really low so get to take that daily also. I'm not going for any of those osteo preventive drugs as both my mother and grandmother had taken them for years. It didn't do a thing as both had multiple back compression fractures due to deteriorating bone strength.

Great news Lori,

No blood draws til August! Yay! Enjoy your stable counts! Hope you are getting out and enjoying some of this great New England weather too.

I decided to take fosamax, I started last summer cause I already have osteoporosis . My mother had bad back fractures too but was never on any meds. I don't have any problems with the fosamax..... I guess it is all a risk. I wish I didn't have to take any meds at all.

Dru!

Good for you! My wife is on the Fosamax too. I pester her to run with me some. You need to do impact exercises! Now I can bug you too! How are things on your side of the US? Pretty quiet here. The garden is out and the kids are good. My wife will still not let me go and get another cat. I have 3 now..... I have managed to drop 20 of the prednisone pounds. So that is getting better! Take care and let me know whats new! I go back to doc on June 3.

Jeffrey

I agree with you Jeffrey; you need to do impact exercises. I've been doing them for years and it has kept the bones in better shape. I use to run 5-6 days a week, but now I just do 2 days of running and 2 days of swimming.

I also think that lifting weight helps your bones, but I'm not able to do much of that. None of us really know the affects of these meds until later on in life. My doctor did tell me that he believes that the swimming helps your platelets to go up. So that is just a thought.

Dee Dee

Great news, Lori. I am glad to know that your situation is stable.

Thanks for the info about bone problems. I haven't taken anything except Calcium tablets time to time for bone. My doc didn't give me any medicine to protect my bones. I am not clear whether my levels of vitamin d and calcium are normal or not. will ask them next time when i see the doc.

The literature about the link between steroids and bone problem says that people who take steroids with a total amount above 2600mg may have good chance to get bone problem (20% according to studies on SARS patients), things get more serious and it has high possibility if the amount is beyond 4000mg. I have calculated my amount and found it is around 2700mg. Hopefully I would be fine. I think I need to take some vitamin d now to protect my bones if it is not too late. If there is anything useful, please let me know.

Thanks Jeffrey

I have 3 cats too, plus a dog and 2grown kids at home, busy!

I wish I could run or even just walk but now my hemoglobin has gone down. Have been able to drag throu work okay. I do some exercises most days...bench press 3 to 5 pounds not kidding, at least it is something!

Dru,

Just do what you can! Let me know if I can assist in any way. Everyone good on your end? Our daughter and son in law just bought a new house. Let the fun begin! LOL

Jeffrey

Maybe someone could come do my laundry? I can drag the basket of clothes down the steps, but can't bring one back up.

That is just the level I'm at too, slide the laundry basket down the steps, but no can't bring it back up. We need some help!

I managed to drag a basket up the stairs! Where there's a will, there's a way. It was either that or start drying myself after the shower with toilet paper.

I put the basket up two steps, put one foot on the first step, then puuuulled myself up with the rail. Move the basket up two steps, etc etc. Now I have towels!

Oh the joys of being in a boot! I was there a few years ago with a nutcracker fracture of the cuboidal bone in my foot from falling down the stairs. I resorted to throwing laundry down the stairs and making my boyfriend or neighbor bring stuff back up. If they only had mini elevators for that purpose! Hope it heals quickly!