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http://mastcelldisorders.wallack.us/yabb/YaBB.pl General Mast Cell Disorders Discussion >> General Mast Cell Disorder Discussion >> Using Prosteglandin Drugs http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1319807320 Message started by summerfields on 10/28/11 at 02:08:40

Title: Using Prosteglandin Drugs
Post by summerfields on 10/28/11 at 02:08:40

This is a long shot and may not find any responses, but I wanted to ask, just in case anyone else here had experiences to share.

SO FAR, my MCAD has only been diagnosed by my proving to have an overabundance of Prosteglandins, and I haven't been willing to go through aspirin desensitization to see if it would help (the only local allergist knows nothing about it and wrote in my medical notes that she didn't even believe me). So I'm not taking anything for that aspect of my MCAD, and I just battle reactions daily on my own (taking Zyzal, with Singulair and Claritin also in my arsenal), trying to avoid everything that I know can set me off with anaphylaxis.

Now I have been diagnosed with Glaucoma, and apparently I have already lost quite a lot of my peripheral vision, and risk going blind, which depresses me as much as anything in life possibly could, having always been a visual artist.

The eye doc agrees that all of the older drugs are totally contraindicated in me, but the one they prescribe everybody these days, with the least trouble, is Xalatan.

Well, Xalatan is a Prosteglandin, and I already have too much of that. The doc knows nothing about MCAD (the usual story), and poo-poos my questions and concerns.

I have read a couple hundred patient reviews of the drug, and amongst most "normal" folks -- not having MCAD -- a lot get severe pain, and blurred vision, which are concerns large enough, but worse, some report an increase of "allergies to everything", and "asthma-like attacks", and "trouble breathing".

Those are things that already plague me in a severe way, besides 26 years of chronic pain and fatigue.

I'm scared to use this drug, so I haven't yet. My body won't bear an increase of reactions.

Does anyone else here, with MCAD and anaphylaxis history, have any experience with this kind of drug? Either Xalatan itself, or other Prosteglandin drugs?

Is it likely to increase my anaphylactic events and asthma, both life threatening, or is that "not necessarily so"?

Title: Re: Using Prosteglandin Drugs
Post by Lisa on 10/28/11 at 02:58:07

Gosh, Summer, I´m sorry to hear about this news!! I wish I knew an answer. Yet, you are right, you need to get some feedback and I think that you need to ask your oftamologist to speak with Dr. Castells. She´s the MCAS expert and she should have some kind of input on this to help keep you out of trouble. You can´t ignore the glaucoma, it must be treated, but you´ve got to have help with how to deal with your masto if the meds interact with it. So see if he can contact her directly.

Lisa

Title: Re: Using Prosteglandin Drugs
Post by Starflower on 10/29/11 at 07:21:16

Hi summerfields,

It's a great idea to ask Dr. Castells. I can understand why you're so concerned. I've learned the hard way to be super cautious about any drug/supplement that has blood-thinning properties. That being said... Lisa is right that glaucoma is serious and you need to be treated. I wouldn't automatically rule out Xalatan. It might not increase your MCAD symptoms as much as you think. Even if it does, you might be able to counteract that with higher doses of antihistamines and/or other medications. What are you currently taking and what are the doses?

I'm sorry that you're dealing with more than one health problem! I know the feeling >:( It sure makes things complicated.

Heather

Title: Re: Using Prosteglandin Drugs
Post by summerfields on 10/30/11 at 05:44:35

I've got multiple pages on my listing of health problems and many of those issues have become very serious by now -- this mast cell degranulation business gets in the way of everything I need to be taking, as I react to pretty much all drugs, and even finally lost my last antibiotic, so I'm living as carefully as possible.

I have Rx Zyzal, standard daily dose, to take regularly, and OTC Claritin. Allegra gives me serious reactions.

I'm avoiding Prednisone as even a pre-medication as my glucose is already a big problem (haven't begun insulin yet, but will finally be starting -- with the usual trepidation -- on my next doctor visit, I can not tolerate any of the oral Glucose-lowering drugs).

I've wondered if a small dose of Prednisone at infrequent times of special concern (dentistry, drug testing) wouldn't raise my glucose dangerously, but I think it probably does raise it quickly, even in a single dose.

And I've wondered if I should ask for Ketotifen, if it's available here, for using right before those times of concern. I want to know more about that one, if it will act quickly enough to stabilize things just on occasions.

Yes, it's all so complicated. I'm generally left on my own (thank you all for this place) and I've found myself beginning to get very depressed about it all. Right now I can't get into my regular internal med doctor until mid-January.

All I can think else to do before trying out the Xalatan (and each daily dose for a while) is Benadryl, and then space the doses far apart until I see for sure what happens. My intuition says it's not a good bet for me.

Quote:

be super cautious about any drug/supplement that has blood-thinning properties.

Are Blood thinners a problem?

I have started consuming Turmeric, Cayenne Pepper, and Ginger for their anti-inflammatory properties (inflammation seems to run rampant in my body, causes very much trouble) and Bilberry for eye benefits (circulation), but they are all blood thinners. I've wondered about that aspect. Most herbal supplements I can't even tolerate, but so far, those I have been able to.

Title: Re: Using Prosteglandin Drugs
Post by Joan on 10/30/11 at 09:00:13

Hi Summerfields,

I agree with all who have recommended you or your doctor get in touch with Dr. Castells. Yours is a complicated case, and you don't want to make any big mistakes when it comes to either the MC disorder or your vision. It would be best to have someone like her to coordinate your treatment and meds with your specialists.

Are you able to take Tylenol? If so, it also inhibits prostaglandins. I find it helps me with pain and other symptoms of inflammation. It isn't indicated if for people with liver problems, though.

Some people have found relief with a bioflavonoid called Quercetin, which is anti-inflammatory. I think regular use of the older antihistamines is not advisable for glaucoma, unless there's an allergic or masto emergency.

Personally, I wouldn't start anything new until you or your doctor has been able to consult with Dr. Castells.

Title: Re: Using Prosteglandin Drugs
Post by summerfields on 10/30/11 at 10:49:43

Quote:

Are you able to take Tylenol? If so, it also inhibits prostaglandins.

I didn't know that, I thought only aspirin countered it. Yes, I can do Tylenol.

Thanks to all of you for the advice. I really didn't get the impression that my doc would be open to discussing anything with an unfamiliar doctor in Boston over an illness he never heard of (he wouldn't even look at my papers I had taken in), but I'll keep it under consideration -- I wish. Of course Dr. Castells also doesn't know me or my situation, either.

Quote:

older antihistamines

There's another wrinkle -- do you mean like Benedryl or Zyrtec, being bad for Glaucoma?

Title: Re: Using Prosteglandin Drugs
Post by Starflower on 10/30/11 at 13:37:21

Blood thinners are not a problem for all people with mast cell disorders. For me they cause abnormal bleeding (nosebleeds, petechiae, abnormal uterine bleeding) plus dizziness that I can't get rid of with antihistamines. It's not fun! If you're not having these kinds of symptoms I wouldn't worry about it.

I'm totally with you on avoiding prednisone (unless you have a life-threatening autoimmune disorder that won't respond to anything else). Are Claritin and Xyzal the only mast cell medications you're currently taking? I also take an H2 antihistamine (Zantac), a leukotriene inhibitor (Singulair), and a mast cell stabilizer (Gastrocrom). The last two have made a BIG difference in the quality of my life. It would be great if you could get a Rx for ketotifen, but it's only for prevention of symptoms, not "rescue." You have to take it every day for it to work.

Heather

Title: Re: Using Prosteglandin Drugs
Post by summerfields on 10/31/11 at 02:26:26

Thank you, Heather. I'm going to ask for these -- that I don't have -- when I see my doctor next.

I do have a couple of bleeding issues on occasion -- I'll have to weigh the risks and benefits. Very complicated!

Title: Re: Using Prosteglandin Drugs
Post by jbean on 11/01/11 at 10:52:32

I agree with the posts saying that you need to ask a mast cell expert about this.

I have elevated prostaglandins as well. I did not do so well on aspirin. If you do wind up taking that, then I would perhaps be cautious about taking other things with blood thinning properties at the same time. This might be too much and cause problems.

Are you going to a major eye center for your glaucoma? That is a good idea considering the complications you might have with your case.

Title: Re: Using Prosteglandin Drugs
Post by summerfields on 11/01/11 at 11:41:32

Quote:

Are you going to a major eye center for your glaucoma?

No, I just have an ophthalmologist at one of the two local medical clinics. I've liked him the last ten years, when nothing was being diagnosed (and I seemed simple to him), but now, I've had to be concerned how he wouldn't look at my papers detailing my other health issues, drug allergies, etc. -- this happens everywhere I go, they want to give me drugs, dyes, etc., without ever asking or listening first. But I am a major problem, I have many "rare" disorders, and have had reactions to so many things, they just aren't used to encountering anyone like me.

Title: Re: Using Prosteglandin Drugs
Post by summerfields on 11/02/11 at 04:15:17

Thank you to everyone who responded.

I wrote an email letter, myself, to Dr. Castells this morning. I hope she doesn't mind.

Title: Re: Using Prosteglandin Drugs
Post by Joan on 11/02/11 at 16:31:41

I hope you hear back from Dr. Castells soon!

Diphenhydramine has been contraindicated for glaucoma in the past. I don't know about Zyrtec or the others, but if you look them up individually, there should be information online about that.