Mast Cell Disorders Forum

Mast Cell Disorders Forum
http://mastcelldisorders.wallack.us/yabb/YaBB.pl General Mast Cell Disorders Discussion >> General Mast Cell Disorder Discussion >> Benedryl http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1301783036 Message started by Sarah4 on 04/02/11 at 11:23:56

Title: Benedryl
Post by Sarah4 on 04/02/11 at 11:23:56

I take Benedryl at night when I am having a really rough time, and it works well for me. I have noticed that I always feel much better the day after I take it. I keep reading that it isn't a good idea to take it too often - can somebody explain why that is?

Thank you!

Title: Re: Benedryl
Post by Riverwn on 04/03/11 at 11:15:26

Hi Sarah,
It was because I talked to Nancy Gould who is an expert in Mastocytosis research, an RN and a patient too.. She advised that Benadryl effects an enzyme that allows mast cells to degrade faster...so keep it for an emergency drug, not every day. Since then Lisa talked to Dr Castalls who said it was fine to take Benadryl every day, so I would go by Dr Castalls advice.
Hugs,.
Ramona

Title: Re: Benedryl
Post by Lisa on 04/03/11 at 12:36:47

Just for the record, it wasn't me who spoke with Dr. Castells about this. It's was another member here who is her patient.

Lisa

Title: Re: Benedryl
Post by Sarah4 on 04/04/11 at 11:00:31

Thank you, that's very helpful. I have been having more of these stupid anaphylactic/toid episodes at night the last couple of weeks, and I was worried about taking too much Benedryl and somehow making things worse.

I think I need my meds adjusted but I can barely convince my skeptical doctors up here to keep prescribing the doses I am currently taking. This is so frustrating.

Title: Re: Benedryl
Post by Riverwn on 04/04/11 at 12:32:07

Im sorry Sweet,
Youre singing a familair song but it doesnt help to hear that when youre suffering for it. You know most meds are OTC (hint hint).. I would slowly and gently see which meds help me the most and move them in a higher dose direction to see where you need to be.. but of course, Im really pro-active and a pain in Drs rears lol..

Im used to giving the DR report and gently suggesting what the patient needs by what I see--and Im used to Drs wanting me to do that and taking my suggestion. it IS very frustrating when suddenly Im put in the passive role (and its MY care!).

Do what you feel is right for YOU.. You shouldnt be having daily reactions, your meds arent high enough then... and anytime a reaction starts, take one extra pill of whatever helps you the most--like Benacdryl, Singular, or Vistaril.

Hope you feel more under control and better soon :)
Hugs
Ramona

Title: Re: Benedryl
Post by Josie on 04/04/11 at 12:41:32

Hi Ramona ,

I feel the same about my previous ability to make my " in my experience " suggestions or out and out tell them if it is required .

My GP here is with me , we had a very good consultaion a week ago where I told him I wanted more vestril . It also cured him of any thoughts I may be depressed as I was smiling ;-)

I have stayed on 300mg twice a day of ranitidine and my tummy is much better .

hugs
Jose

Title: Re: Benedryl
Post by Sarah4 on 04/07/11 at 04:46:00

Thanks for the support and suggestions. I have been taking extra Benedryl which helps with the reactions but makes me groggy.

I'll keep fiddling with my meds and hoping the doctors get on board. It's not like I would be asking to take more meds because I'm addicted to anti-histamines.

Title: Re: Benedryl
Post by Josie on 04/07/11 at 05:57:17

Hi Sarah ,

I hope you are doing better . When my meds change , i stay on the same dose for a while to see if it is going to work . I keep some pirition ( same class as US benadryl ) in reserve for rescue . I have one dose of hyroxizine as well ;-)

I have to be careful to medicate appropriately . I not talking about in shock , that has its own rules , meds -if you can , epipen and help .
I don't know what background daily meds you are on . You may be undermediacted as I was for a long time . I pick antihistimines related to the symptom . Piriton for itching and my chest , inhaler for my chest , ranitiddine for stomach swelling , pain and cramping , hyroxizine - for rapid progress . I know this seems complicated . For many set rescue doses work . I just start with the most likely ;-)

In my first year i was wholly under medicated , and was given steriods to use in a biggie . So I did , but because I was so under medicated everytime I came off the steriods slowly I would have another reaction with shortness of breath. BUT because I did this at home , and treated myself , apart from epi pen level reactions , which were 5 at home 1 epi pen , my GP had no knowledge of my true state and frequency of my reactions . She just filled my prescriptions without question . When I raised how rough I was with her , she said reduce the steriods , but I couldn't - because I wasn't adequatly medicated .

I am not saying wait to speak to a doctor if you are getting very ill . BUT if you don't work with your doctor they will not know what is happening . Not doing so puts you at higher risk of serious incidents as there may be a reason for your increase in symptoms which needs dealing with , which you don't identify and your doctor has no idea of .

So , no you can't get addicted to antihistamines , but there may be a need for higher daily dosing which your doc will be completely oblivious too .

Yesterday , I was really rough , I was up to my limit medication wise , i rang my GP to ask , so it was noted , no call for 20 mins so i took 2 doses of piriton ( similar to benadryl US ) which settled me . The oncall rang back later . Today my regaular GP knew about yesterday and is ringing the specalist to encourage him on .

Have you got a specalaist ?
I hope you are feeling batter today

hugs
Jose

Title: Re: Benedryl
Post by Sarah4 on 04/08/11 at 04:56:16

Thank you for the advice. I have been taking more Benedryl, and that does help. My main problem is that I am pretty sure the mast cell disorder is causing my POTS, and I am not sure what to take to combat the chronic orthostatic intolerance, or if it has just gone on in my body for so many years that it has somehow caused permanent damage to my cardiovascular system. I take Zyrtec 10 mg twice a day, Zantac 150 mg twice a day, doxepin 20 mg, Nalcrom/Gastrocrom, Singulair 10 mg and synthroid - but I still have to take midodrine every 4 hours to keep my blood pressure up. This makes me thing that the underlying mast cell problem is not well enough controlled, but I don't know what to add or change.

And you are very right, I do this mostly on my own and my doctor isn't really aware of all that is going on. He tends not to read anything I bring him and doesn't really seem to understand. I don't really have a specialist yet, just a dermatologist familiar with mastocytosis, but not with MCAD.

I would like to try more antihistamines to see if I can get better results keeping my blood pressure up and steady - I worry about changing my own doses, but with so little medical oversight, don't know what choice I have.

Again, thank you.

Title: Re: Benedryl
Post by Riverwn on 04/08/11 at 06:59:56

Hi Sarah!
I have a few suggestions for you Hon... First remember that MCAS and Masto are treated the same way. Now 2 more
1) your Zantac?? (rantidine).. Most of us are on 300 mg twice a day.
2) Singulair seems to help most people quite a bit, extra energy too, so take it in the am, and many people have doses of 20 mg or 30 mg that seems to help more.
Please talk to your DR about this :)

Im not quite sure about meds for your low BP and POTS.. what is your BP running most of the time?
Hugs.
Ramona

Title: Re: Benedryl
Post by Joan on 04/08/11 at 07:29:28

Hi Sarah,

This may seem elementary, and the problem could be a lot more complex, but are you staying very well hydrated? When I first became sick with masto, I had chronic low blood pressure (some mornings, 80/50, then a high of 90/60 later on).

A doctor told me to fill a jug with 64 oz. of water and make sure I drank most of it each day. Sometimes I would add an electrolyte powder to it or some flavoring that I could tolerate or some herbal tea to make it possible to drink that much. I don't know your weight, but I'm sure you can ask your doctor or find online what the right amount of fluids per unit of body weight is correct for you. This made an enormous difference for me and helped with fatigue and lightheadedness and muscle pain. Now my BP is usually 110/60, and I feel good with that.

Title: Re: Benedryl
Post by Sarah4 on 04/08/11 at 08:29:52

Thanks again for the advice, I will talk to my doctor about this. I do keep well hydrated now, as well as consume salt. I don't know how to get my doctor more informed about this, so he might be more supportive of me trying more medications - when he heard my tryptase was low and my skin biopsy inconclusive, he decided I didn't have mastocytosis and could go off all the meds - I had to try to explain it all again, and it's just exhausting.

Without midodrine my bp tends to run low (90/60ish), but when I go from supine to standing it falls over and over again and my heart races to keep it up.

I do think this has been going on for a long time (at least 25 years) and over time it has gotten worse and kind of turned into something else (POTS).