Thanks for all the info on how you are combating this disease. I read the abstract at Pub Med and this sounds quite promising with no long-term-usage problems like the triamcinolone acetonide (steroid) cream. On the downside, this cream is quite expensive, so if one's insurance plan won't cover it's cost, that could be problematic for some people.
What is the condition of your sores after using the Tacrolimus on them ? Do they actually go away, or do they just stop itching? Thanks and best of luck!
A 60 gram tube of Tacrolimus cost me $113 using GOODRX at ACME Savon pharmacy. Savon has the best price of any pharmacy.
I use 1 or 2 grams a day to cover 20 sores. Real tiny dabs makes the sores smaller the next day. And if you do not expose your self to any heat or friction, the sores get smaller day by day.
I have been in and out "warm" places and by using Tacrolimus the sores never get bigger. Stay same size.
Example: I eat at a Diner where the AC is usually 70 degrees. Some times it is 73. Well, at 73 degrees and 2 hours exposure, my GD acts up a little. But at 70 degrees GD is happy.
Bottom line, you are looking at $1200 a year. Not bad for the price.
A 60 gram tube of Tacrolimus cost me $113 using GOODRX at ACME Savon pharmacy. Savon has the best price of any pharmacy.
I use 1 or 2 grams a day to cover 20 sores. Real tiny dabs makes the sores smaller the next day. And if you do not expose your self to any heat or friction, the sores get smaller day by day.
I have been in and out "warm" places and by using Tacrolimus the sores never get bigger. Stay same size.
Example: I eat at a Diner where the AC is usually 70 degrees. Some times it is 73. Well, at 73 degrees and 2 hours exposure, my GD acts up a little. But at 70 degrees GD is happy.
Bottom line, you are looking at $1200 a year. Not bad for the price.
Thanks, that is interesting that your sores are so highly sensitive to a few degrees difference at temperatures that low.
I use GoodRx too to save on my Zolpidem sleep meds at Costco.
So, as I understand it, the Tacrolimus keeps your sores small and under control, but it is not making them go away completely. Would that be accurate? Thanks.
1) got GD 10/20
2) treated with Steroid twice/day for 17 days
3) all gone 11/20
4) After research of steroid problems. Ask the Derm for non-steriod Rx, Got 60g tube 12/20Tacrolimus.
5) Did not use till 6/21
6) Began to log a TIME/TEMPERATURE max exposure to manage sores
90 for 2 minutes max
74 for 60 minutes
etc etc etc
7) If I stayed at less that 70 for a couple days they started to clear.
8) As it is (to make my life better next summer) during this Summer, I have been making preparations for next Summer, and must be outside doing things. Adding more Duct Outlets from crawl space to rooms in house. Adding wiring and circuit breakers for 220Volt window air conditioners.
9) Getting into hot car to go to Hardware Store for parts, making all my cars bullit proof so I do not have to change a tire on some isolated road in 90 degrees.
10) a lot of hostile temperature situations. So I just keep the GD at bay till it gets cool.
11) I will find out about GD remission after Summer.
1) got GD 10/20
2) treated with Steroid twice/day for 17 days
3) all gone 11/20
4) After research of steroid problems. Ask the Derm for non-steriod Rx, Got 60g tube 12/20Tacrolimus.
5) Did not use till 6/21
6) Began to log a TIME/TEMPERATURE max exposure to manage sores
90 for 2 minutes max
74 for 60 minutes
etc etc etc
7) If I stayed at less that 70 for a couple days they started to clear.
8) As it is (to make my life better next summer) during this Summer, I have been making preparations for next Summer, and must be outside doing things. Adding more Duct Outlets from crawl space to rooms in house. Adding wiring and circuit breakers for 220Volt window air conditioners.
9) Getting into hot car to go to Hardware Store for parts, making all my cars bullit proof so I do not have to change a tire on some isolated road in 90 degrees.
10) a lot of hostile temperature situations. So I just keep the GD at bay till it gets cool.
11) I will find out about GD remission after Summer.
Hi @jbmakos, welcome to Connect.
Here is some information about Grover's disease http://rarediseases.org/rare-diseases/grovers-disease/ "Grover's disease is a rare, transient skin disorder that consists of small, firm, raised red lesions, most often on the skin of the chest and back."
I'm tagging @shirlwpb@cindylou on this message as they have asked questions about Grover's in the past too.
@jbmakos, have you been diagnosed with Grover's disease?
1) got GD 10/20
2) treated with Steroid twice/day for 17 days
3) all gone 11/20
4) After research of steroid problems. Ask the Derm for non-steriod Rx, Got 60g tube 12/20Tacrolimus.
5) Did not use till 6/21
6) Began to log a TIME/TEMPERATURE max exposure to manage sores
90 for 2 minutes max
74 for 60 minutes
etc etc etc
7) If I stayed at less that 70 for a couple days they started to clear.
8) As it is (to make my life better next summer) during this Summer, I have been making preparations for next Summer, and must be outside doing things. Adding more Duct Outlets from crawl space to rooms in house. Adding wiring and circuit breakers for 220Volt window air conditioners.
9) Getting into hot car to go to Hardware Store for parts, making all my cars bullit proof so I do not have to change a tire on some isolated road in 90 degrees.
10) a lot of hostile temperature situations. So I just keep the GD at bay till it gets cool.
11) I will find out about GD remission after Summer.
I would agree with your temperature correlation and add humidity. 70 and dry is great, 70 and humid is not so great. Also I've posted before that ice vests are great for when you need to be in the heat. I have one called a Flexi Freeze (there are others). It holds ice against the body trunk (chest and back). Numbing stops the itching for considerable time. I find I can go out and mow the lawn on a warm day (then I take a cool shower) and do fine. I take extra ice packs and play 18 on reasonable mornings. Wear a T shirt under it and it never feels shockingly cold, but it's just as effective. I also use it a couple times a day when I have an outbreak and it reverses the process. It doesn't cure Grovers but it is a means of remediation or control that works quickly and effectively.
You might look into an evaporative mattress cooler (goes between mattress and sheets). These are remarkably effective to keep you cool and dry while sleeping (my 'bumps' start to rise and itch in the warmth of the sheets). Works best in low humidity.
I had low level Grovers for a couple years. As it got worse about a year ago I employed ice treatments. I still have GD but I've keep it at a low and quite tolerable level with ice treatments. If I experience conditions that might induce a flair I put on the ice vest and follow with a cool (not cold) shower and it has keep outbreaks at bay.
Try cold treatments, I'd like more people to try them. It works in real time to provide relief and improvement. I know of no pill or shake or oil or other foreign substance that is reported to do that. Maybe I'm just lucky, but perhaps you will be too. It will do no harm, you've nothing to loose.
Good luck with the whole thing, I feel for your discomfort.
Thank you! It appears to be spreading to my lower back and sides of my body. Does the disease usually “run it’s course”? I’m an active
Male in my 30s. I don’t know how this could’ve happened to me. What therapies have people generally done to subside the rash? Like I’ve said, I’ve tried every cortisone cream and even light therapy
The only treatment that stopped my symptom's and about 50% of us is cilantro smoothies, the cilantro is a heavy metal detox, it chelates your blood pulling out heavy metals. Google the tie in to Parkinson's, Alzheimer's and Grover's Disease. I am still clear after living with GD for 4 years previously.
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For one thing, the steroid cream can cause your skin to thin in the area it is applied.
Here's an article: https://www.verywellhealth.com/steroids-topical-steroid-side-effects-1068831
Interesting. Thanks!
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1 ReactionThinning of skin. Eventually skin will be permanently damaged. Also you may get "Red Skin" everywhere. Face, hands. Real freaky>
"https://www.healthline.com/health/red-skin-syndrome"
A 60 gram tube of Tacrolimus cost me $113 using GOODRX at ACME Savon pharmacy. Savon has the best price of any pharmacy.
I use 1 or 2 grams a day to cover 20 sores. Real tiny dabs makes the sores smaller the next day. And if you do not expose your self to any heat or friction, the sores get smaller day by day.
I have been in and out "warm" places and by using Tacrolimus the sores never get bigger. Stay same size.
Example: I eat at a Diner where the AC is usually 70 degrees. Some times it is 73. Well, at 73 degrees and 2 hours exposure, my GD acts up a little. But at 70 degrees GD is happy.
Bottom line, you are looking at $1200 a year. Not bad for the price.
-
Like -
Helpful -
Hug
1 ReactionThanks, that is interesting that your sores are so highly sensitive to a few degrees difference at temperatures that low.
I use GoodRx too to save on my Zolpidem sleep meds at Costco.
So, as I understand it, the Tacrolimus keeps your sores small and under control, but it is not making them go away completely. Would that be accurate? Thanks.
1) got GD 10/20
2) treated with Steroid twice/day for 17 days
3) all gone 11/20
4) After research of steroid problems. Ask the Derm for non-steriod Rx, Got 60g tube 12/20Tacrolimus.
5) Did not use till 6/21
6) Began to log a TIME/TEMPERATURE max exposure to manage sores
90 for 2 minutes max
74 for 60 minutes
etc etc etc
7) If I stayed at less that 70 for a couple days they started to clear.
8) As it is (to make my life better next summer) during this Summer, I have been making preparations for next Summer, and must be outside doing things. Adding more Duct Outlets from crawl space to rooms in house. Adding wiring and circuit breakers for 220Volt window air conditioners.
9) Getting into hot car to go to Hardware Store for parts, making all my cars bullit proof so I do not have to change a tire on some isolated road in 90 degrees.
10) a lot of hostile temperature situations. So I just keep the GD at bay till it gets cool.
11) I will find out about GD remission after Summer.
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Like -
Helpful -
Hug
2 ReactionsI hope you are successful!
Yes Brown Derm. RI Hospital. Had biopsy 1st apt 10- 19- 2021
Go over positive results ( grovers )
I would agree with your temperature correlation and add humidity. 70 and dry is great, 70 and humid is not so great. Also I've posted before that ice vests are great for when you need to be in the heat. I have one called a Flexi Freeze (there are others). It holds ice against the body trunk (chest and back). Numbing stops the itching for considerable time. I find I can go out and mow the lawn on a warm day (then I take a cool shower) and do fine. I take extra ice packs and play 18 on reasonable mornings. Wear a T shirt under it and it never feels shockingly cold, but it's just as effective. I also use it a couple times a day when I have an outbreak and it reverses the process. It doesn't cure Grovers but it is a means of remediation or control that works quickly and effectively.
You might look into an evaporative mattress cooler (goes between mattress and sheets). These are remarkably effective to keep you cool and dry while sleeping (my 'bumps' start to rise and itch in the warmth of the sheets). Works best in low humidity.
I had low level Grovers for a couple years. As it got worse about a year ago I employed ice treatments. I still have GD but I've keep it at a low and quite tolerable level with ice treatments. If I experience conditions that might induce a flair I put on the ice vest and follow with a cool (not cold) shower and it has keep outbreaks at bay.
Try cold treatments, I'd like more people to try them. It works in real time to provide relief and improvement. I know of no pill or shake or oil or other foreign substance that is reported to do that. Maybe I'm just lucky, but perhaps you will be too. It will do no harm, you've nothing to loose.
Good luck with the whole thing, I feel for your discomfort.
-
Like -
Helpful -
Hug
2 ReactionsThe only treatment that stopped my symptom's and about 50% of us is cilantro smoothies, the cilantro is a heavy metal detox, it chelates your blood pulling out heavy metals. Google the tie in to Parkinson's, Alzheimer's and Grover's Disease. I am still clear after living with GD for 4 years previously.
-
Like -
Helpful -
Hug
2 Reactions