TOPIC:

July 30th cellulitis in elbow. I am allergic to Penicillin so a GP at my surgery (not my GP) prescribed Clarithromycin 500mg twice daily for a week.
I asked for Azithromycin as I know that does not drop my counts but was refused as allegedly is not as effective for cellulitis as Clarithromycin.
Reluctantly I agreed to take it as cellulitis carries a high risk for sepsis.

First dose taken at 4pm. 6 hours later an horrendous posterior nose bleed with a duration 30 minutes. I took 20mg Prednisolone.
Second dose 8am next day, blood drawn at 11am, 2pm another nose bleed (40 minutes this time), I take 25mg more of Pred.
Ring surgery ask for a doctor to call me. 4:40pm yet another nose bleed. 6:30pm Duty doctor phones, I explain problem, my results come in as we speak.
Platelet count is 12, CRP is 10 which isn't too bad for my age Hb is 117. No more Clarithromycin for me. Azithromycin prescribed but hold off
starting it for 48 hours unless cellulitis becomes worse. I told her I was going to take 15mg/day Pred & repeat count on Monday. She agreed with that.

Haematology registrar from hospital then rings me to see if I am aware my count is in the gutter. I tell him the saga, he agrees with the plan & messages my consultant to ring me Monday, which she did. Azithromycin started Monday and Pred down to 10mg for next 4 days then drop to 5mg for another week. Blood sample incorrectly labelled at surgery so lab refused to test it.

Repeat bloods Friday 7th Aug:- Platelet count 211, CRP<5 and Hb 113 so now I am anaemic!!! Which does not surprise me the amount of blood I lost.
Another blood test next Friday when all the antibiotics and excess Pred will be well and truly out of my system.

I strongly suspect that had I been given Azithromycin in the first place (it appears to have worked by the way) I would not be typing this missive nor facing another Pred taper. I am not a happy bunny

Wow, mrsb, you have had a rough time! Glad you finally got things under control and hope everything goes better for you now!

Oh my word mrsb I am so so sorry!! Bless your heart - aside from what that doctor caused you to go through, cellulitis is very painful!

I think an orthopedic surgeon I saw after I was diagnosed with cellulitis in lower left leg a week after total knee replacement last year must know that one you saw at your surgery! Hew told me I didn't have cellulitis and any improvement after taking the antibiotic "was in your head" !!! I will never let that surgeon touch me again !!! What is wrong with these doctors?!

I sure hope your count etc is good with this next CBC - that would be the 14th right?

I hate to hear of your latest troubles, Mrsb. Your experiences with your ITP shouldn't be discounted, not even by someone with a medical degree. The smartest doctors should be willing to learn something from each patient they see.
Your gut feelings about which treatment will harm you should never be ignored.
Hope you're feeling better now.

Sometimes I hate doctors.... Glad you are doing better and was able to find a doctor who listened and prescribed the right medication for you. Hope you feel better every day.

Doctors can be difficult sometimes, but I'm glad you're doing better! Hope everything goes well for you!

Count 122 on 75mg Eltrombopag and 4mg Prednisolone. Will be staying on these doses for a couple more weeks then hopefully I can recommence Pred taper.

mrsb that is super!!

YAY!!

That's great news!

Oh my dear,
I’m glad it got resolved at the end. I do agree that GPs underestimate a patient’s awareness of their own condition.

In my case, my low platelet count was neglected for years by my GP doctors despite multiple visits inquiring about it. In 2008 I discovered that I had low platelet count ranging from 90 to 100. I was told by the GP doctors that it’s normal and I just have a low baseline. So I trusted them. Since then I have always had unexplained bruises, heavy periods, gum and nose bleeds. Every time I visit my GP for any of my symptoms I was told the same thing. So I continued to trust them. In 2013 I had a wisdom tooth extraction and kept bleeding for 5 days, my pillow was drenched in blood and my entire jaw was purple. I went back to my dentist and he told me to get a blood test done (count was 85). The GP assured me again that this is nothing to worry about.

In 2017 I was very ill and extremely weak I could faint that I had to go to the emergency room and to my surprise my count was 3. I developed severe life threatening complications and was hospitalised for 20 days. After that incident I was FINALLY diagnosed with ITP.

The moral of my story is that patients should look out for themselves and never rely on what the doctors say 100 percent. I think I should have been diagnosed with ITP in 2008. Due to their neglect and carelessness I could have died. The question is, what if I never actually went to the Emergency room that day? What if I never insisted to be seen despite their initial refusal to accept me (fatigue was not enough to get you seen at the emergency room).

Every patient knows what they are going through more than anyone else.

So mrsb04, you did the right thing for being fully aware of your condition and I think everyone else should do the same.

Its always best to be a well informed patient, no matter what is wrong with you. It has been my experience that you get much better attention , care and treatment if you show you are knowledgeable about your condition and are not the kind of person to be patronised.

Obviously not at my practice Margaret. I explained to the duty doctor about ITP and which antibiotic would not affect my platelet count. I might as well have spoken to a brick wall. I have been deprived of the right to self manage my ITP.
Going back on steroids is not good from an osteoporosis point of view, especially after 2 recent fractures. I have been borderline anaemic for a while now and the nose bleeds have sent me into diagnosed anaemia. Now I am having to take iron tablets which themselves could lower my count so I may be on the damn steroids again for ages.
I have made an appointment (telephone only at my practice due to Covid) to inform my own GP how I feel, which quite frankly is furious. I shall tell him that unless he documents these concerns on my records, which incidentally I can read on line, I shall be submitting a written complaint to the Practice manager.

Good for you mrsb - you have to stick up for yourself! I'm just sorry this happened to you - it should not have!

My count is back down to an asymptomatic 26. I had a call from a haemo registrar today (my consultant is on leave).
Upshot is he asked me to go back to 5mg of Pred a day as he feels it might take a while to get my count to stay up. Weekly blood counts for at least a month. Oh joy. He also promised to write to my GP practice and tell them never to give me Clarithromycin again.

oh mrsb I 'm so sorry - darn it! Hopefully it won't take long for your count to get up and be stable. I like that they are keeping an eye on you/counts - and thankfully he will be letting your GP practice never to give you that antibiotic again!!

First time I've had any dealings with the haemo reg I spoke to on Monday. True to his word he has written to the practice and recommended I am not prescribed Clarithromycin again.

That's great mrsb !!

Just had a very long chat with my GP. He too is upset over what I have been through and has asked me to write to the practice manager expressing my concerns. He told me people with long term conditions know what works for them and what doesn't and he would respect that with any of his patients. He has documented on my records I am not to be given Clarithromycin again and if he is unavailable who ever deals with me must discuss options with me before prescribing anything.

Your GP sounds like a good one mrsb

Count up to 53.

Well some good news that is!!

Certainly is Mel. Thank you.

That is good news! Happy for you, mrsb!

Ugh, maddening! I've had something similar happen for a totally unrelated condition, where the specialist told me "that's not what the literature says." I responded with "the literature helps you approximate and predict response in the average patient and I'm telling you with certainty what happens in your target population of one (1), sitting in front of you!" Then I stormed out of his office without signing out and went to a different doc, which is thankfully possible on the type of insurance I have in the US.

So glad it's all behind you and platelets are behaving again.

Maria 3132 wrote "the literature helps you approximate and predict response in the average patient and I'm telling you with certainty what happens in your target population of one (1), sitting in front of you!"
Great words Maria I'll borrow that if I may should I find myself in that position again.

Went to haemo clinic for the first time since Covid 19 joined the world.
Bloods sent Friday (taking 75mg Eltrombopag and 5mg Pred daily) count is 147 so I am now twitching and will be keeping very well hydrated. I cut Pred to 4mg this morning before I saw consultant and am now officially on a slow taper to get off the wretched stuff again.
How long that will take depends on how my system copes which I fervently hope is better than last time but I'm not holding my breath. Realistically looking at the end of the year at the earliest before I'm completely off it again.
My Hb is back up to 122 though so that has cheered me up a bit. Full anaemia screen again at beginning of October. Fingers crossed I can stop the iron tabs then. They are a pain to take and make me feel really nauseous.

That is good news mrsb - platelets and Hb and tapering pred!]
Good luck!!