38 and just diagnosed with HSP

Thanks for the info. I have been on the prendasone for 2 days now 60mg/day and it seems that it is still getting worse in my ankles. Not sure if it's the ice pack causing or what. I figured ice would help the swelling but think I might lay off for now. I have an appt with a rheumatologist in a few days and possibly shed some more light on it.

Some Rheumatologists are aware of this, but I think they tend to prescribe different drugs.   The swelling of joints is a lag.  You had the build up and it takes a while to drain whatever is going on, maybe a few days.   However, you should have stopped seeing new spots if you've been on a couple days.  If not and if symptoms do not get better then you don't have the issue that responds well to Pred.  Either way, don't worry at least for a couple more days and definitely keep us posted.

Ok thanks

So the rash has been pretty bad for about 6 days now. When does it usually stop spreading?

Well, it depends on the type you have.  If allergic or similar type it may coincide with how much of something you were exposed to and if you are still exposing yourself to it.  If the other type all bets are off.  See the new comment below about another type that is treated with Dapsone although I think that type could be more of the longer term type of issue.

Types like mine seems to come on and then go away in a few weeks or sooner if using Prednisone, but other types like theirs Pred doesn't do much and if they use it too long, then side effects occur.   The other comment is valuable stating that you really just have to keep pouring over the different types and treatments and do not just accept what one or two doctors tell you because Nobody knows.  HSP is merely a description of symptoms really and says nothing about true cause, only triggers.  Like if your body is weak in this way the immune system is reacting in a bad way, not really overreacting else you wouldn't keep getting sick which you do because your body is weaker.  You need to be extra careful and avoid alcohol, excess sunlight exposure, being around sick people, and getting too much exercise even when you think you are better, else you may trigger an episode again until your body gets well enough hopefully never to get it again.  However, the younger you are, the more likely to not have it reoccur so please study up now just in case.

Is there a way to post pictures here?

When I add text, there are 4 icons on the top right and farthest to the right is upload pictures icon.  Come to think of it, I've never come across any on this forum for ones I viewed.    An interesting side story.   I was so frustrated by my doctors not knowing anything, that I took a few pictures and uploaded it to some kind of ask a doctor app on my phone.  Within a few minutes I had a reply of some doctor saying, gee that sure seems like HSP.  That is how I found out.   I just happened to have seen a local drugstore a few times prior to seeing the doctor when I had rashes and the just happened to try prednison when the steroid creams didn't do anything.  Clearly the pred worked for me but again when I told the doctor this they ignored it and told me to try the cream again.  Then after that was when I tried that app and went back to the doctor telling them and of course they hate when people try to educate a doctor about things.  They did say they would research it, but on third appointment they had not and still didn't allow a prescription of pred so I went back to local drugstore doctor and got one.  Thank goodness because it finally got me better when I was seriously getting bad because my doctor was forbidding me to take Pred.   Long story short. I have personally often had terrible experiences with doctors and this is one disease out of many that most have no experience with and often dont want to feel uninformed about it.  Ugh  !  

Doctor's kill me.. come in early to get labs done so we can get results. Waited 3 day for first round and was supposed to get my uranalisis back today. Now 7 days in starting to get pain in my stomach and lower back! Assuming kidneys or something.

Thanks for the info. I do drink regularly but never had a problem till now. Have you had to cut out alcohol completely?

This is so bizarre and with health care costs in the US sounds like it's going to cost me a ton of money to figure it out!

Hi,

I can occasionally manage one glass of wine or similar without symptoms but I pretty much don't drink at all any more. It isn't worth it. It might be worth cutting it out for a couple of months to see if there is improvement and then have alcohol again to see if you get a flare up. There's quite a bit on google about alcohol being linked to vasculitis. There is also a drug-induced type of HSP. Think about whether you've started any other medication recently.

I was lucky enough to work in an office when my ankles were really swollen which meant I was able to keep off my feet for a lot of the day. However, the 10 minute walk on my journey home had me pretty much in tears from the pain. I couldnt bear anything touching my ankles at that time.

At least you've got a doctor that recognised it. It took me over two years to get a diagnosis and any medication. Another four years before I found a drug that helped! I've been through prednisone, azathioprine, mycophenolate mofetil and dapsone. None of them did anything except the dapsone. That stopped my swollen joints, stomach pain and rash within two days. Hope you feel better soon.

Yea I. Thinking of hitting John hooking in MD. it's a 4.5 hr drive but sounds like they a good ptogram

So the capstone seems to be across the board with alot of folks. I am going to push that with the doctor today. Thanks so much

Wow that's crazy! I'm 6 days in and 2 days on prendasone and my feet are getting worse. Swelling won't go down.

I would love to share pics but not sure how?

Yeah just take it one day at a time. I a bad case it took months it went from a heat rash to blood blisters like grapes on my ankles, knees, wrists and buttocks in about 72 hours. The second flare up was just hurrendous purple raised rash not the huge blisters. Just keep going to the doctors. I hope you get sorted soon x

Thanks Joanne. I am try to figure out how long it keeps spreading. I want to make sure they made the correct diagnosis. I am 6 days in with really bad looking groups of blotches and my foot feels like it wants to explode from the swelling. I am 2 days on prendasone 60mg and is still spreading down my feet worse.

I was probably 3 days in before my reluctant mother called the GP for a home visit that said get her to A&E immediately I was hospitalised a week and can honestly say the swelling was so bad my feet couldn't fit shoes or socks on, once they got that bad they stayed like that for quite some time I had to sleep with a frame over my legs with a sheet over the frame as my weeping blisters were sticking to the bed sheets. It sounds very similar. I've never taken the meds your on. So not sure how effective they are. Google hsp and look at the images and see if you find something similar. They also monitored me by urine samples daily. I had to pee on lab sticks that always showed +++ protein and blood that lasted about a year.Have you had your urine tested?

I am have that and retesting all my labs tomorrow morning. I do construction and work on my feet all day. I took today and tomorrow off trying to get under control but I could see being out of work for some time. The word thing is alot of the blotches have turned dark red line dried blood and now I have a new burning feeling huge spot starting on my ankle. Some of the spots are starting to look a little Whit in the center and the white part looks like it wants to peel off like a blister. Do this sound accurate?

Yes it does. Poor you I was knackered with it, I couldn't walk so if it continues you will need to take time off for sure. I bet tomorrow it will show in your results. You must take it easy otherwise if you do too much it aggregates it. Let's hope it does spread too much. poor you it's really horrible. It's internal as well as external it takes its toll on your body.

I appreciate all of your help! Sounds like I'm in for a hell of a ride. What's sucks is I'm a single provider for my family. Wife is stay at home mom with my youngest who has rare genetic disorder and 2 more in school one of which has several hearing loss at age 8 and wears hearing aids. Can't wait to see what's next. Fell like someone has it out for me!

Sorry for the rant but it's a bit depressing

Your in a difficult sistation but how I see it is if you are on an aeroplane your told to put your one oxygen mask on first before anyone else's. You have to listen to your body you will know if your doing too much. Your no use to anyone if you don't take care of yourself.I slept myself better at 16 and had 6 weeks off school when I was 30 I had 2 kids and almost didn't have time to be ill which prolonged me getting better. I'm a sink or swim kind a girl and sounds like you are,keep going one day at a time, don't put too much pressure on yourself but don't over do it. Everyone is different and there are all kind or different reactions with hsp, so think positive and rest when you can.

I wondered about this.  I was very lucky to have a job where I could sit and was actually in such bad trouble even sitting up was hard for many days.  I can't imagine even trying to explain to an employer how severe the symtoms of this disease can be or even how to tell them when you would be better, since you could have another episode or reoccuring ones.  And if you do talk about this, then an employer may start to either think you are overstating how bad it is or treat you worse knowing that you will know possibly be out due to this in the future.   I did not talk about it.  It was hard enough trying to live with it even around my family.  It's just a bunch of, Oh, anything gets you sick.   Are you actually feeling that bad?   It is not a known or well defined disease so people can't relate, especially because doctors don't even know about it.   I feel for you.  It's going to be a difficult time for you, especially because you are going to force yourself to go back to work before your body is ready, potentially making it worse.    Let's hope either the Prednisone works for you, or Dapsone will or something else.    Either way, you better know cut out all the allergens just in case because you can't afford to even risk that it may be due to that.  I don't think I can post links, but from rarediseasesdotorg we have "In some cases, it has been suggested that this disorder may be an extreme allergic reaction to certain foods, such as chocolate, milk, eggs, or beans. Various drugs (e.g., nifedipine, diltiazem, cefuroxime, diclofenac, etc.), bacteria (e.g., Streptococcus), and insect bites have also been indicated as possible causes in some cases. Rubella precedes the first symptoms of  HSP in about 30 percent of cases. In about 66 percent of cases, an upper respiratory infection precedes the onset of symptoms by about 1 to 3 weeks. A definite link to viral infections has not been proven."   Keep doing your google research and try everything in the book.  You can't take as long as it took many of us to get well.  Push hard on your doctors and see other specialists if they aren't cutting it.  Again, my allergist/immunologist was really good.  That specialty should know about it.

Sounds good. I will start looking for on immediately. Just in the last 2 hrs I went from being able to walk to the kitchen to can't put any weight on one foot. And the rash and swelling in that ankle are completely out of control. Feels like the skin is going to rip. I feel bad for everyone with this cause I have a huge tolerence for pain and this is almost crippling.

I'm jus5 thankful their are fourms and great people like you all out her helping.

Hi Billy,

I am in the US but experiencing a case very similar (turned 29 last month). I actually have had small amounts of these spots showing up on my lower legs for months but I always brushed it off as shaving irritation, dry skin, etc. Finally I went to a dermatologist when I noticed the spots on my feet where I don't shave and could no longer make that excuse, and he gave me the diagnosis and said there's nothing to do but it would clear up in 3 months. Then, 6 days ago, I went to a wedding and had a lot of wine. Before I got to bed I noticed the rash creeping up both legs, and now both feet (even the bottoms) and calves are covered in red and purple blotches, and every time I touch my legs I feel like a new one pops up. I went to an emergency clinic 4 days ago (tried to get in with the specialist but he had a family emergency) and so far my kidneys are ok and no protein or blood in urine, and they did give me prednisone, but now I've been on it 4 days and it only seems to be getting worse.

I am wondering - for you, does the rash itself hurt? I have noticed that the prednisone did help my ankle and knee pain (all 4 leg joints were swollen and hurting) but the rash itself is prickly and stinging and it drives me insane. I am just wondering if the rash itself hurts for you too, because I am also concerned about misdiagnosis.

Yes mine in the worst spots like my lower legs felt like they were on fire. Doctor could actually feel heat coming off my legs. I have had no relief from prendasone and my doc took me off of it till I see the rheumatologist this Tuesday. I drink pretty regularly and from what I hear that can have several effects. I am still waiting for my uranalisis to come back but at day 8 last night I started having pain in my back and stomach.my ankles have been swollen for 6 days now and are very painfully. I haven't had the urge to itch it till it started getting dark red( I think some are drying up?)hang tough hope you feel better

Brent

I'm sorry to hear that and I hope you feel better too. The purple looks worse but it actually means that particular spot is starting to heal up, so hopefully that's good. I have not really had stomach pains yet but I also have had Crohns Disease since I was a child so it's possible I just didn't notice the pain bc I'm used to it. I haven't even found a rheumatologist or kidney doc yet so I have a feeling I have a lot yet to do.

Hang in there as well. This message board has already helped me a lot because I no longer feel like a freak show, turns out plenty of people go through this and it does eventually go away. At least youre not alone!