Results Back--Need Help W/meds!!!!

[Godsgal]

Got my bone marrow biopsy and CT scan results back!!!! Thanks be to GOD it's all negative!!! Just have the cutaneous masto!!!!

Now to the tricky part.........I feel terrible!!! Low blood pressure, tachy, itching, hives, itchy spots, difficulty breathing, numbness/tingling in throat, face, etc. I can't seem to find any meds that help me. I think the fillers in these meds are messing me up because I get hives, difficulty breathing, itching, or whatever when I take them. Claritin makes me itch....took zantac 75 mg last night and woke up with hives. Took allegra 180 and woke up the next day with hives. I feel intoxicated on zyrtec. Maybe I could try that out at night instead.

I do take Singulair 10 mg. I need more meds! Any suggestions on how to add in meds and get relief?????

[Sarah4444]

I'm so sorry your having this trouble. I dont' seem to react to the meds themselves, so I'm lucky.

The only thing I can think of is to start Gastrocrom, to see if you can make your mast cells less reactive and then maybe start to at least tolerate some anti-histamines to try to help all the symptoms.

Can you take Benedryl? When I was still really sick I was so itchy, got hives a lot and took Benedryl regularly on top of everything else until things started to calm down a bit.

Also, for me the mast cell activation and POTS are a vicious cycle, and I need to treat both - as described by the POTS/MCAD article, I think the overactivity of the sympathetic nervous system causes mast cell degranulation, as well as the histamine etc causing low blood pressure, etc. So midodrine/salt/fluids, etc. make my MCAD treatment work better and vice versa (I think). But it took me a long time to find the right balance and it's still a real work in progress (and some days I really feel like I'm not there yet either).

[juliegee]

Congrats on your test results. Sorry you are still feeling so badly.

Your severe symptoms started with a sinus infection? Maybe the antibiotics for the sinus infection played a part? Is the sinus infection gone? When I react to a med, like antibiotics, it sometimes takes 3 weeks for side effects to go completely away.

Or did they start when you trialed MCAD meds? Did you start one at a time so that you could gauge benefits/side effects? You may need to step backwards and stop your MCAD meds that you say are NOT helping. Wait a few days, then slowly add one at a time. Wait another 3 days, then add another, etc. If everything greatly worsens, you may find that they ARE helping more than you think.

It sounds to me like your masto symptoms are not well treated. I turned the corner (in a good way) when I added a string H-1 at night. Doxepin at first. Then, when I was improved, I switched to atarax. Maybe after you've untangled what's causing what- consider one of those. Or, try adding a mast cell stabilzer as sarah has suggested.

Weren't you supposed to see Dr. Afrin on 5/17? Did you?

Hugs-

Julie

[Sarah4444]

Yes! I forgot about doxepin. I'm up to 30 mg every night and I think it's one of my most important meds.

[Godsgal]

May 23rd is the date for Dr. Afrin! So excited!!! I definitely need help. The low blood pressure is terrible. It's taxing me. And my compressions are starting to trigger me so that doesn't work. I only take Singulair, Midodrine, pepcid, and benadryl as needed. I tried claritin and realized I was itching like crazy from it and I was being triggered. I tried allegra a couple of times and I think I was reacting to that so I stopped...it has iron in it, as does zantac...which I reacted to both. The trouble is that I'm reacting all the time to seemingly everything and it's hard to get calmed down enough where I can even try something new. It's an awful state of fear, trying these new meds, having scary reactions, but knowing I need something. I was just prescribed prednisone but I believe this can cause blood clots and I have a protein s deficiency & factor V leiden so probably not a good idea.

I'm only 100 pounds so these doses just knock me out! I have been debating about trying zyrtec tonight at bedtime. I took my son's liquid dose in the a.m......just an infant dose, and I felt intoxicated!

[Godsgal]

I see both of you take zyrtec....at night? How would you feel if you took it in the morning? And should I start with 180 or less than that?

[Sarah4444]

This is the med schedule that has been working for me:

Half and hour before getting up: 10 mg midodrine and .125mg Synthroid

When getting up: 10 mg Zyrtec, 150 mg Zantac

10 mg midodrine every 3.5-4 hours, 5 mg in evening (total 35 mg)

200 mg Gastrocrom dissolved in warm water 20 minutes before each meal

Singulair 10 mg at 11 am with second midodrine dose

Zyrtec 10 mg at 3 with third midodrine dose

1 g salt capsule with breakfast and lunch

30 mg doxepin and 150 mg Zantac before bed

It has taken me months of trial and error to fine tune this and it's still not perfect. I take Benedryl 50 mg when I feel breakthrough anaphylactic stuff (low bp, tachy, itching, severe flushing, etc.). I also take pain meds prn. But along with very gradual and challenging increases in exercise, I have gone from bedridden to driving again (short distances) and just beginning to feel like there is some pattern to the chaos. With this combination I feel I have minimal side effects, just a little drowsiness.

[juliegee]

180 mg of zyrtec??? Yep, that'll knock you out. I hope it's a misprint, Jared. For the record, even though zyrtec is non-drowsy H-1, there is a small subset of the population that still experiences lots of drowsiness with it. My son can't take it at all- even at night. He takes loratidine/claritin instead at night only.

For my MCAD, I take 10mg zyrtec, 10mg singulair, 300mg ranitidine in the AM (upon waking) and 25mg atarax and 81mg aspirin at night before bed.) I take extra zyrtec during the day if I need it OR my atarax early if I'm reacting to something. I use an epi-pen as needed & occasionally atrovent via a nebulizer (when my chest hurts.)

You sound really sensitive to meds and dosages. (I weigh more- 130lbs, so we have a difference there.)By the reactions you are having to non-drowsy H-1's, I suspect that atarax and doxepin will be too strong for you. I think finding an H-1 that you can tolerate (zyrtec, claritin, allegra, etc.) and taking a small AM dose & a higher PM dose consistently will make all of the difference. Also, a mast cell stabilizer like ketotifen or gastrocrom might help calm things down.

I pray Dr. A will get you on a good regimen. So happy you are seeing him- report back & share all you have learned!

Julie

[DoozlyGirl]

Godsgal,

So sorry you are so sensitive. I understand your fear -- I lived that way for almost a year. Carrying a set of Epi-pens helped me "gain control". I dealt with a super-duper sensitive immune system in the past that resolved several years ago and today is only sensitive. Over the years, I've tried over 35 meds, which I couldn't tolerate and with the help of an allergist, sorted out some of my issues. So my experiences come from a different perspective.

There may be some cross reactivity going on. I was on HCTZ, a diuretic, which is contraindicted in patients with a sulfa allergy, and contraindicated with lasix. Duh, that was an easy one. Along the way, I learned that sensitive patients (us) tend to react to the inactive ingredients/can't process them, such as gluten, lactose, magnesium stearate, corn starch, dyes, etc. Every prescribed/OTC medication has a package insert/prescribing information which lists active and inactive ingredients, which you should be able to find them online. Note that generics vary the inactive ingredients from the brand name, so you may be able to find a different manufacturer. Your pharmacist can help you figure out which brands to reasearch. You may want to consider that liquid caps don't have the stabilizers used to make a tablet, such as magnesium stearate or corn starch. For example, I can't tolerate the brown tablet Advil in pill form, but tolerate the green liquid gels. Couldn't tolerate synthroid, but levoxyl is ok.

You could also consider having a local compounding pharmacy make up an antihistamine/other meds your are senbsitive to without the fillers/inactive ingredients. Your prescribing MD just needs to write a script. This could give your body a rest and lower your allergen overload until you find relief.

For me, gastrochrom, aciphex (H2) and allegra (H1) helped me until my immune system calmed dowm. At that time, I also eliminated exposure to food allergens and environmental triggers (MSG, frangrences/dyes, molds) and treated my chronic sinus infections/skin rashes/yeast overgrowth which were attributed to candidiasis, due to overuse of antibiotics to treat my constant infections. I used fragrance-free/dye-free liquid Benadryl capsules for my breakthrough anaphylactoid/axis reactions. Epsom and baking soda baths helped my skin issues.

Best wishes with your upcoming appointment.

Lyn

[Godsgal]

Thank you everyone....

and YES....that was a mis-type on the 180 zyrtec....that would kill us!! Sorry about that!!! Brain fog in action over here! Yes....I took the 10 last night. I think I might try the compounding suggestion as well. Great idea there.

[lieze]

Not sure this will help you but I'm pretty sure I have either a sulfite sensitivity or intolerance.

So I think in most cases it's the corn starch I'm reacting to not the actual medication.

I think trying the compounding meds might help you.