Zoogle

Thanks everyone, Flop I understand you have been unwell & I appreciate your effort to help me, thankyou. Are you feeling better? I am taking my whole dose first thing in the morning & the "bouncing off the walls" was figurative, although I feel like that is what my brain is doing. I don't think I am behaving overly strange but my teenage daughter is certainly finding some of what I say amusing. A few days ago while driving I stopped at a green light (very embarrassing) & have now banned myself from driving until I get on lower dose at least. My tachycardia has also been worse on the pred, my doctor didn't think it was related but now I'm not so sure. I will try the lemon juice, thanks Rhonda. I've been doing some searches on herbal sleeping remedies but don't know if any of them really work. Most of our shops are shut over the Easter weekend so I can't get anything until Tuesday. Bronwyn

Happy Easter Sue & Everyone, Snow sounds wonderful, it never snows here & we have been having one of the longest, hottest, driest Summers on record. Maybe I can send some of our heat over to you & you can send us some of your snow Have a lovely Easter & enjoy all the chocolate. Bronwyn

I have been on Prednisolone now for 3 weeks & although my doc has started tapering the dose I will be on it for at least another 4 weeks. It has made a huge difference to the severe pain I was in & has had the added benefit of putting my blood pressure up (155/95) which has almost stopped the near syncope that I get every time I stand up. BUT - I can't sleep, most nights I'm lucky to get 5 hrs of broken sleep & then I'm bouncing off the walls again. I can't concentrate, my mood is all over the place, ranging from being silly to being really angry & half the time I sound like I'm drunk. I have really bad fluid retention & can't get most of my shoes on now, my face doesn't look like mine anymore. I'm already on a lot of other medications & my doctor is unlikely to add sleeping pills or diuretics to my chemical cocktail, so I'm hoping for some natural remedies. I know lots of you are trying to fluid load & I guess I'm asking for help on reversing that. Any tips for a better nights sleep would be greatly appreciated. Thanks Bronwyn

When you say steroid shots, do you mean directly into the joints? Or intramuscular & therefore slow release of systemic cortisone? I've had multiple cortisone injections into my joints over the last 7 years, most often into my shoulders & knees for bursitis & into my spine for a herniated disk. The side effects of these injections were minimal to none & the relief of pain was fantastic. I also regularly need oral cortisone (prednisolone) & am on it now (have been on it for 3 weeks), the side effects aren't great, sleeplessness is probably the worst. However, since being on it I no longer feel like I'm going to pass out every time I stand up. I normally have low blood pressure (100/60) & get severe postural hypotension. My blood pressure has gone up on the prednisolone (155/90) so I think it is helping with the postural hypotension. I am still getting the tachycardia. Cortisone does have horrible side effects, especially if used long term, but it is also very good at reducing inflammation & getting rid of pain. I try not to think about the long term effects it may be having on me & just enjoy the pain relief. I would definitely choose the injections over the oral cortisone, much less side effects. Good Luck

Hi Katherine, I had iron deficiency anemia & have been on & off iron tablets for years. Three years ago I had to have 2 iron transfusions (2 weeks apart) because I wasn't absorbing enough iron even on tablets. I definitely felt better after the transfusions, energy level was greatly increased. High dose iron tablets don't have to be large pills but if you have the tendency to get upset stomach you might do better with a lower dose tablet taken 2 or 3 times a day than 1 high dose tablet a day. Make sure you take the iron tablets with vitamin C, this aids the absorption & you will get more out of each tablet. Hope this helps, Bronwyn

Hi Julie, The information that I have read suggests that Tryptase is always elevated in Systemic Mastocytosis, but as with all science there are probably exceptions. Early in disease there may be normal levels of tryptase at some times, also some specialists think that in cutaneous mastocytosis tryptase can be within normal limits when mast cells aren't active. There is also some disagreement amongst research about what the upper limit of normal tryptase should be. Last year research was published by an Australian group that tested over 2000 blood samples, that concluded that the upper limit of normal tryptase should be 7 not the current 13.5. Some Australian hospitals have now adopted 7 as the new upper limit. The treatments for mast cell activation disorder and mastocytosis are similar, in that medications are aimed at alleviating the symptoms. Usually this involves taking both H1 & H2 Antihistamines (Benadryl, Zyrtec, Fexofenadine H1) (Periactin, Ranitidine H2); Mast cell stabilisors (sodium cromoglycate, ketotifen); Leuketrine antagonists (Singulair); Proton pump inhibitors, which are used to reduce gastric acid (Omeprazole, Losec) & if required anti-inflammatory &/or pain medication. The trick to most of the meds is to take them every day & not just when you start getting symptoms, that way you block the histamine etc before it can cause the symptoms. Your already on H1, H2 & singulair so your on the right track. I suggest you talk to your doctor about the others & maybe see if you can get your tryptase checked again. I'm not sure about the availability of some of the above meds in the US or their names. My doctor has a couple of my meds ordered in from the UK & NZ. Ketotifen works fantastically - no itch, no headache BUT I gained 5kg in 5 weeks on it. Almost everyone who takes it gains weight, it slows the metabolism down. Even when I cut the dose in half I continued to gain weight. I eventually stopped taking it because I'd rather be itchy with a headache than obese. You may also want to consider some topical cortisone cream for the hives, I also use lots of sorbolene cream which I sometimes keep in the fridge - very soothing on itchy red spots. Mastocytosis does not usually run in families but I don't know about activation disorders, allergies etc. As for autonomic stuff tangled up with mast cell stuff I'm definitely a bit twisted I also have Autoimmune Autonomic Neuropathy. I developed both conditions as an adult & both have continued to get worse. Some symptoms are well controlled by meds & some are not & some days are ok & some days are horrible. Ok your probably asleep now, I've dribbled on here for ever, feel free to ask more questions but please remember I'm not a doctor & I do suffer from brain fog so my advice has no guarantees. Bronwyn

G'day Julia, Nice to see another Aussie here, I live in Adelaide. I joined this forum just a couple of weeks ago & have found lots of good info. I've also found it really nice to meet people who understand how I feel. I hope you find the forum useful & get the advice you want. Bronwyn

Hi Julie, I have Systemic Mastocytosis which was diagnosed by skin, bowel, & bone biopsies. Most docs would normally do blood & urine tests first to see if there is increased histamine (urine) & tryptase (blood). In Mastocytosis histamine & tryptase are elevated all the time but in a condition called mast cell activation disorder histamine & tryptase are only elevated during an attack & for a few hours afterward. Mastocytosis is actually very rare but mast cell activation disorder is more common. Severe headaches, nausea & diarhea are some of the most common symptoms in mastocytosis, but these symptoms also occur with mast cell activation disorder & allergies. Do you get flushing & tachycardia (tachycardia persists even when lying down) Itching? Are the spots/hives there all the time or do they go away completely? There are several types of skin lesions in mastocytosis but they do not go away entirely even with daily use of strong cortisone creams. If you scratch the spots do they swell up & get really red? The skin biopsy they do is called a punch biopsy, its not huge but is quite deep so has to have one stitch. The bone biopsy is very painful. I recommend you demand the blood & urine tests first before you even consider a skin biopsy. Hope this helps, I'm happy to answer any other questions you have, Bronwyn

Hi everyone, Thanks for the welcome, I'm already getting addicted to this place, reading posts nearly every day. I've been going over heaps of old posts & answering lots of my questions. For those who were commenting on the Marmite, it's actually Vegemite we Aussies can't live without & there is no better breakfast than Vegemite on toast. Lukkychrm42 if you like Marmite you will love Vegemite. As for the drought here it is really bad, they're saying now that it's the worst drought we have ever had. Adelaide has just had the hottest, driest summer on record. My autoimmune dx. was first suspected a couple of years before they concluded that it had to be autoimmune. I had a weak positive ANA, & then tested positive to anti-endomysial which causes Celiac Disease, my bowel biopsy looked a bit like celiac but the Gastroenterologist wasn't convinced. I went on the gluten free diet for 6 months & actually got worse, they repeated the endoscopy & did more bowel biopsies which confirmed the bowels had gotten worse & that I also had duedenitis. All the docs then agreed it wasn't Celiac disease. By then my immunologist was heavily involved in a research project that was attempting to identify what they suspected was another auto-antibody involved in Sjrogens, Lupus & a few other Autoimmune diseases. He decided to use some of my blood in their experiments with mice - my blood killed the mice I felt terrible, my doc was excited. He arranged for me to be included in a clinical trial using high dose IVIG, I had the same dose I'm getting now but every day for 5 days, by the third day the diarhea & stomach cramping, & the bladder problems were gone & my blood pressure was a bit more stable. Lots of other stuff continued to improve over the next few weeks & for a while I felt pretty good. I'm not sure if this Autoantibody has been given a proper name but it inhibits M3 muscarinic receptor (M3R)-mediated neurotransmission and causes bladder and bowel dysfunction. Most people with autoimmune diseases tend to have multiple auto-antibodies & my docs are sure that there are other unidentified auto-antibodies. What they don't know yet is whether or not the Mastocytosis is related. (I think it is.) I'm on & off Prednisolone a lot & the side effects are awful, my postural hypotension & to some extent the postural tachy are better on Prednisolone but I think it may be because I get really bad fluid retention on it & it also puts my BP up. Can't say I would recommend it, I don't have a choice & need it for joint, bone & muscle pain. Hope this helps someone, Cheers Bronwyn

Hello, My mother use to get chronic bladder infections that went on for years, as soon as she got off the antibiotics it would come back. She changed docs & was told to drink lots of cranberry juice, within a week she started to feel better. She now takes high dose cranberry capsules every day (cheaper than the juice) & she has not had an infection for 18 months. It has no side effects, so maybe worth a try. Bronwyn

Hi Canadagirl, I get Different sized pupils quite often, especially when I'm tired. It is a sign of autonomic dysfunction. As part of my workup I had pupilometry done. High tech camera attached to a computer flashes different intensity lights in your eyes (you sit in a dark room) they can then analyse the pupil reflex, intensity of reflex etc. Any abnormalities are due to autonomic dysfunction. My results were completely abnormal - really slow response & not enough response. My pupils on the day of the test looked the same size but when they measured them with the camera they were slightly different, which is not normal. I frequently get blurry vision which is worse at night, my docs have said that my abnormal response to light would be contributing to this. Do you get blurry vision too? Bronwyn

Hi Lisa, I get severe cyanosis (blue), this is most often in my hands & feet but I also get blue arms & legs too. I was tested for Raynaud's & do not have it, in my case the docs think it is being caused by blood pooling, vascular stasis & vascular dilation. Raynaud's is caused by vascular constriction & it most often occurs when the hands &/or feet are exposed to the cold. Usually when the hands are warmed up they go bright red & can become really painful. To check if I had this my finger tips were put under a high power microscope with intense light behind them, so they could see the blood vessels. I don't know if Raynaud's is a common problem with POTS but I think blood pooling may be, others here will undoubtedly know more. With blood pooling, one method to help prevent it, one I have to do all the time, is to keep moving. (eg. I wriggle my fingers, hands, feet all the time). Hope this helps a bit. Bronwyn

Thanks everyone for the welcome. I've been reading heaps of old posts & already learning heaps. Rhonda I'm happy to discuss the IVIg with you, I've sent you a message but I'm still learning how to navigate around here so if you don't get it then I must have stuffed it up! Sorry in advance if I ask dumb questions or things that have been explained elsewhere, Thanks Bronwyn

Hi Ami, Thank you for the warm welcome, I spent a year (1991) in the UK on a working holiday (more holiday than working) I absolutely fell in love with it. I went back once in 1993 & really hope to get there again sometime. I couldn't have survived this without my family but as supportive as they are they really don't understand what it feels like to be chronically ill. Great name by the way, my daughter's name is Amy! Thanks Bronwyn

Hi everyone, I have probably got a hundred questions but I'll save those for later & introduce myself first. My medical problems go back for about 20 years and initially were fairly mild and intermittent but I just never felt really good. Around 1996 my health started to deteriorate, at the time I was a single mum with a 4yo daughter & I was studying full time at Uni, so of course my doc blamed it all on stress. Finally in Nov 1999 after seeing numerous doctors (a few of which had told me there was nothing wrong with me) & loads of tests an endocrinologist suggested the possibility of Mastocytosis because my tryptase levels were very high & referred me to an immunologist at a public university teaching hospital. In 2000 after lots more tests Systemic Mastocytosis was diagnosed. Most of my symptoms at that time seemed to fit with the diagnosis & my docs started concentrating on controlling it (there is no cure yet). The next 3 years were a complete nightmare, I just kept getting worse more symptoms were developing some of which my docs thought were not related to mastocytosis. To cut a very long story short, in Feb 2003 I was diagnosed with Autoimmune Autonomic Neuropathy (AAN). Docs thought an unrelated second Primary condition; I thought a convenient box to put all my non-masto symptoms in. There were some abnormal autoantibodies found but no specific autoimmune disease could be identified. I don?t doubt that I have an autonomic disorder but I?m not convinced that this isn?t being caused by the masto. In Aug 2003 my doc got approval for me to have intravenous immunoglobulin (IV IGg) & for the first time in years things started to improve. (I still have this every 4 weeks along with a pile of other daily meds.) I can?t work & some days are really bad, I just live a day at a time & never give up on a cure being found. I came across this site while researching Mastocytosis & autonomic disorders & got very excited when I found references to mast cell activation disorders & mastocytosis with autonomic disorders, for the first time in a long time I don?t feel like I?m a freak of nature. I?m really looking forward to getting to know you all & hope you don?t mind an Aussie joining you. Bronwyn.