Patients with Difficult-to-Treat MKD/HIDS

[@rubajis4121]

Danke sehr für Ihre Mühe

[@PinkGapple16]

hi my name is robert I actually was diagnosed with this in early 2019 I am 21 years old and have never had this before I think when I was in basic training for the army the multiple vaccinations they gave us must of introduced my dorment hids I am no longer in the army as I was medically discharged. I am currently having a severe flare up I personally use prednisone I was told it is safer than those other drugs but the issue is if I take my prednisone even an hour or two late after feeling my lymph node swell up then the prednisone basically loses its effectiveness I took it yesterday about 6 hours late and well here I am extremely destroyed very difficult to get up and do anything. I get my flare up once a month on rare occasions twice in the same month I think that depends on how depressed or stressed out I am if I will have another flareup in the same month. My flare up is introduced in the first 2 weeks of every month starting with lymph node swelling for the first 1-2 days then an intense imobility fevers sometimes stomach issues difficulty eating or drinking anything severe pain in the lymph node and extreme headaches sometimes and severe agitation. I am hoping one of these days they can create something that will fix my hids normally I don't have an issue with it as long as I take the prednisone at the right time but even then some months im just so stressed or sad that prednisone cant stop the flareup from happening. I consider the flare up to me as the symptoms after the lymph node swelling normally if I take the prednisone within the begging of the swelling then it will prevent the "Actual" flare up from starting and it will just kind of be tender and swollen for a couple days to a week but I will still be able to function. I appreciate the knowledge in these slides

[@susanst3903]

Thank you for sharing!

[@jrunn93]

I have Hyper IGD. Dealing with a bout of it as I type after getting a tetnis shot yesterday.

[@michaelbags902]

I feel you man. Waited to get the flu shot till I was done with classes since I almost always get a reaction and now im sick for Christmas 😭. Cool to see other ppl w HIDS on the internet