Have anyone try no medication treatment for HSP
Posted , 3 users are following.
hi i. joseph 41 yrs old i was diagnosed with hsp nov. 2019 and im on my 3 week now. 1st 2 week i was given 80mg prednisone to be tappered every 3 days by 10mg. after taking it for 2 weeks the rashes went away and feel better but my stomach got worst my poo got blood aa in fresh bloid and i thought i am not pooi g enough i did not sleep for 2 days its like i want to die.. so i stop pred and felt better upto 3 days still cant sleep properly but sleeping 1 hr to 30mins. on the 4 day i stop pred i went to work and in the afternoon i cannit move my left leg. next dayi saw small rashes and the next day after that its all over my torso legs hands still have stomach ache but tollerable. om opting not to cure and run its course. it seems medici e supress them but wiill eventually come back. has any one tried this aporoach. thanks
0 likes, 9 replies
kc4tea joseph21281
Posted
wow joseph! please do not stop or change your steroid treatment plan without discussing it with your consultant. 80mg is a huge dose. i started on 60mg and it took me two years to safely in line with my recovery, reduce to zero. please please call your consultant or gp asap for further information. they may be able to help with the sleeping thing if it is bothering you so much. the way i tell myself is i need the drugs to bring my body into balance. and i have healthy strategies to keep my body in balance without the drugs.
i know i havent had a rash since i started taking steroids and my kidney function is acceptable and improved which i am so grateful for.
in line with my treatment i tried everything else i could to get healthy. i went to nutritionists and educated myself about autoimmune conditions
i i overhauled my diet and removed all processed foods. i took up yoga and gentle walking exerises. the more healthy i felt the further i took this climbing hills and going cold water swimming in the sea. i still do all these things 3 years later.
Good luck and please call your doctor to speak to them about your side affects in the first instance.
joseph21281 kc4tea
Posted
thank you for your advice im ignorra nt with my disease good thing we forum like this.
gina66256 joseph21281
Posted
Joseph,
is this the 1st time you have ever had HSP? my son had it for 3-4 weeks at age 13 and DRS said he would never get it again. then at age 19 it came back and now he is 24 . he did steroids for 3 years then dr put him on leopardsy meds that he is on and if he missed a pill it comes back . he gets pain in joints lower extremity and his stomach hurts . now even on meds his stomach has issues . he spends hours in the bathroom.
he has to go once a month for blood and urine samples because kidneys could fail and blood pressure gets really high. THE BLOOD VESSELS ARE BURTING INTERANNALY AS WELL AS EXTERNALLY THATS WHAT HURTS HIS TUMMY. he went on med leave from USF AND IS PRETTY MUCH DIABLED. ITS SAD AND HORIBLE THAT I CANT FIX HIM . he is going to get a colinoscopy
you should probably rest and take meds but idk where u live but find a good rumotologist. maybe it will go away for good , lets hope
joseph21281 gina66256
Posted
thanks alot for your reply it wa really helpfull went to doctor already. you just save me. a big thanks to you. i wish and pray for your son to get well.
joseph21281
Posted
hi guys thanks for your reply really appreciate them.my plan did not push through and went to the hospital last monday because i cannot stand the sleepless night . i went to new doctor and gave me medicine for my tummy Omeprazole 40mg and game me steroid 16mg methylprednistone and 3 x day colchicine 500 mg. after 1 day of taking meds my body athritis improve now im able to walk upright my stomach ache became bearable and may rash seems flatter. able to sleep 3hrs for the first time. im glad that you warned me about it thank you very much for your help. i think im on the road to recovery.
gina66256 joseph21281
Posted
HSP IS SUCH A RARE DISEASE IM GLAD YOU WENT TO THE DR. keep is posted how the meds work . we are lucky to have this forum to help each other.
joseph21281 gina66256
Posted
its my 6th day with meds my rashes is clearing up still feel tired though and my stomach cramps during evening keeps me awake. overall i have improve alot. they gave me meds fot the stomach ache 10mg 3x day buscopan it did the work during the day i feel fine but night time still hurts but bearable thank God for buscopan. tomorrow wil be going to.my dr follow up check up. will post what changes on the meds. again thanks alot for the advice.
kc4tea joseph21281
Posted
no worries joseph. its a rare disease and we cant be expected to learn unless we ask questions. keep speaking to your gp and other medical professionals. keep doing your own research. libraries are great for this - some books are so expensive. and keep focussing on improving your health. im rooting for you!
joseph21281
Posted
visited the doctors today prescription was Colchicine 500mg 3xday for 7 days and he reduce the methylprednisilon (medrol) to 8mg from 16mg 1 day for 7 days i ask if i will continue the meds after 7 days he said no more which is good. did also urinaliysis BUN and Creatinine result is witjin normal limits also did blood chem which i believe normal except the ESR which i have to know. the dr told me that i can go to work next week. thank God for thus forum and to kc4tea and gina66256 for all your advice and sharing of your stories. now i will also share the info to future patient who just like me is ignorrant on this didease.