I’m new on here, recently diagnosed with ITP, I’m also type2 diabetic

[LindaAnne53]

Hi, as my title states I’m new to all this ITP stuff, only diagnosed December 2017, I have diabetes type2 and as such was only put on a short course of prednisone, (started on 80mg, then reduced every fortnight until 2 weeks ago, when I was taken off them completely.) Since a couple of weeks before I was diagnosed I have had extreme fatigue (falling asleep at the drop of a hat) neck, shoulder and back pain. Also I have dizzy spells and tingling in my fingers. Are these to be expected with ITP? I’m having a neck and spine X-ray on Tuesday and I have to admit I’m worried at the outcome.

[Topography52_-]

ITP is a very strange illness and it can be frightening at first you will find this forum an education I have the symptoms you have named above 14 months in I am none the wiser no meds just monthly blood sucking visits to my hematologist : ) stress I believe could be a factor so if possible try and not stress about ITP easy for me to say now : ) with time you take control of ITP don't let it control you.

[LindaAnne53 in reply to Topography52_-]

Thanks for your reply, I’ve been reading some of the posts on this forum and they mostly seem to say that their platelets are between 80 and 15. My last test a fortnight ago I was told they were 350?i go back to the haematologist on March 5th, this will be my first blood test without prednisone so we’ll see what happens, Linda x x

[Topography52_- in reply to LindaAnne53]

Once you get your head round ITP it will make you laugh ( I have purpura rash randomly on my body ) it is looking like a map keep telling myself going to join the dots : ( will make you cry fatigue, achey bones : ( you live with it and it does get easier .

[Doris61 in reply to LindaAnne53]

Linda I have had ITP for going on 10 years. The lowest they have gone has been 65. AND the last 5 years I feel like I have been in remission. I am tired all the time but I get iron infusions. yes my joints hurt all the time but I push through it. Working out if you can and eating as clean as possible has made a huge difference to me. Hang in there! God Bless!

[Seafood in reply to LindaAnne53]

350 is cued. They long for 440. I would go back to normal at 350 mine are 40-80

[Topography52_-]

Prednisone will have highered your platelets counts : ) I believe.

[LindaAnne53 in reply to Topography52_-]

Yeah, I know that as they went up immediately once I started on them, I was rushed into pinderfields hospital with a count of 6, just had the rash on my legs and blisters on my tongue, no other symptoms then, I felt a fraud taking up a hospital bed. I had a bone marrow biopsy done on the day I was discharged and that came back as normal. It’s just a waiting game now to see if it reoccurs, my haematologist has said there’s a 1 in 3 chance of it returning, so I’m just keeping my fingers crossed that I’m one of the lucky ones 😂

[Seafood in reply to LindaAnne53]

Was the bone marrow thing hard? Did it hurt? Have to go under?

[LindaAnne53 in reply to Seafood]

The bone marrow biopsy was quite painful, they don’t put you under, just a local anaesthetic. What you feel is a bit weird really, you feel a pressure type pain and a scraping feeling. It only takes around 15 to 20 mins. Well worth the pain though, because the results are conclusive and it can rule out a lot.

Hope this helps, Linda

[Seafood]

That is weird as my labs keeping testing me for that, however my diet and lifestyle give no reasons. I have felt awful the last few days. They suspect Lupus as well. So much pain it is unbearable.

I so wish sc was ok with medisnal Mary Jane! I went to P.T. All he could say is “steroids” I refuse to take that crape I take promacta. 12.5. I’m thinking of stopping that ang going solo. I think drs are scared to stop it. Because they don’t want to be sued. It’s all a racket

[Justicekelly]

Yeah, it's scary! ITP is very serious and it will now be the most important thing for you to monitor for the rest of your life. I had the same symptoms so i think this is normal. But check with your doctor. As long as you manage your illness and keep up with any meds and whatnot you will be fine

[LindaAnne53 in reply to Justicekelly]

Justicekelly, I have (luckily/hopefully) not had a relapse of the ITP, I’ve seen the haematologist every 3 months and had good platelet levels. I’ve done my own research and I’m now convinced that some medication I was prescribed for my diabetes was the cause of the platelet depletion. Of course no doctor will accept or agree with me, but thing is I was fine before the medication, I’ve stopped using it and I’m holding fine again, it’s nearly 18 months since my diagnosis, so I’m keeping fingers crossed 🤞 x x

[11jackcat]

Linda anne53 can you please tell me the meds you suspect caused your ipt. I also am type 2 and believe this medication dr has me on could be causing my ipt Thorpe you are doing well and thank you

[LindaAnne53 in reply to 11jackcat]

Hi I believe that it was a medication called jardiance, 25mg Empagliflozin, when I first was diagnosed with the ITP I had been on that medication for a month, I stopped it when I was in hospital and touch wood I haven’t had any episodes since and my platelets are in the normal zone, (and have been since January 2018) On researching that medication it has been reported to cause ITP , hope this helps, Linda