Hi all - just wanted to let you know what's happening and ask for input:
I had posted previously about weird allergic type reactions I was having to perfume, smoke, chemicals. Pollen, some foods. It all seems dose related - everytime (since January) that I try to get to 7mg I seem have these episodes.
Am currently alternating 8/7. Wed night had some banana on my bedside to have with my 8mg Pred 01:00 - as my stomach burns - and reacted to it immediately.
Had a bad turn this morning (Thursday) after eating breakfast and this time almost passed out - had to call my neighbour. Turns out that I had only taken 3mg - the 5mg tab was still in the little Perspex container this am.
I think I am scared that I have become increasingly allergic - and if I were not on Pred I'd be in trouble. My bloods all seem OK. Never had allergies before and so have never been tested.
I am following an Autoimmune Paleo diet and trying to avoid high histamine foods too.
Have written to my Rheumy - Rod Hughes - and my GP - so hoping for a response.
Thank you.
Written by
Slosh
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Hello. What are your allergy symptoms exactly? When I was going down in the 10mg to 5mg area I noticed I was getting allergy type reactions like hay fever, nausea after foods, itchy skin, reacting to even brushing against plants and watery eyes even though Pred caused a poor tear film. A dry mouth I don’t recall. I just assumed it was like a rebound histamine sensitivity after major suppression for a long time. It passed after about 5mg and below. Not all antihistamines suit me but I tried a few a settled on a couple but now at 2mg I rarely take them for allergies.
Thanks for your input. Blurred vision, a bit dizzy, stomach ache, if it's something. Ingested it feels like my blood runs cold - like if been injected with a dye, scratchy throat, tingly mouth and feels like my tongue is swollen and then comes the very dry mouth.
The next time it happens - do please consider calling 999 and going to A&E. I mean it. If you are that unwell you MUST see a doctor and have medical help in the meantime. Once an allergic situation starts it can progress fast and become very serious.
At the higher doses of pred it is suppressing the reaction but as you lower it may well get worse. Avoiding histamine is only one aspect of allergy and it must be investigated. Keep a record of the foods you are eating when it happens - but please get medical help assap during an episode.
If docs aren’t interested what about going to a pharmacist to see what antihistamines there are that you can try until you get one that suits, then take it daily? Prevention is better than trying to stop a histamine cascade. If you get any throat or chest tightness you must call the 999, don’t wait for it pass. As PMRPro says, a reaction can escalate rapidly.
I’d probably not self medicate so whatever dose you end up with, it is in its entirety in case there’s a delay and so dose related symptom relief is clear.
I’m being an idiot, I was getting you mixed up with someone else and was thinking Pred. You mean take the offending antihistamine and pitch up with the reaction in full flow? A risky strategy for desperate times. Not sure what to say about that one.
If you have any difficulty in breathing or lose consciousness even briefly call 999 and say which has happened. They will get there and assess you quickly and if they find anything at the time it does smooth the way in A&E - you might still wait a while but they stay with you until you are handed over. Explain to them that doctors haven't been interested and you are worried - then if you have to call them out a few times you are less likely to be labelled as attention-seeking.
I think this could be adrenal related. I was on loads of Cortisone in SA when I had pneumonia. I was on 7/6mg when I went into hospital and took that when I came out - but only after 3 days (long stupid story) and that was the first time it happened actually.
And seems every time I try and go down I react to a gazillion things. I have also been having some pain in my back lately - kidney tests have always been fine.
I feel like I am single handedly bankrupting the NHS! I'm so used to paying for medical treatment but then also having time afforded to your medical problem.
Am thinking of seeing someone privately. The pharmacist suggested to try and get a private appointment at the Bupa hospital at Gatwick. She took her Mum there to see a doctor privately to try and get to the bottom of a longstanding issue. She also suggested Pririton as an antihistamine - less likely to react to it. Scared though.
Rod Hughes obviously gave me way more attention when I was a private patient with him.
Apparently probiotics can lower histamine too.
Thanks all for the concern and wise input everyone - I am feeling pretty scared.
There is something similar going one with me Slosh. I have had hives (urticaria) 4 times in the last month. Never had it before. Always in the mornings before I have eaten, drunk or taken my pred. Does not go away with pred, but does with anti histamine....thank goodness!
I am trying to reduce from 7 to 6.5. This however started when I was still regularly taking 7mg.
I feel my body is struggling to cope and is throwing allergic reactions at me.
I hope you get to the bottom of it.
Mary
PS. Do you have a good resource for a low histamine diet? As I think I ought to try that in case it helps me.
There is a list of foods in the Autoimmune Paleo Diet book that I am following. I have just started avoiding those - didn't even realise that Banana was one of them.
I'm too scared to take an anti histamine as the first time I had this re-action it was after an antihistamine.
It would be interesting to hear what Rod Hughes has to say. It could be to do with the Immune-suppressant action of steroids too. I certainly have hay fever for the first time ( since diagnosis) and have become sensitive to certain cosmetics. I have a dry mouth in bed at night and am concerned about Sjogren ‘s, reluctant to lead doctors anymore, though and have been prescribed pastilles and mouth spray.
Have you tried toothpastes without sodium lauryl sulfate? My dry mouth us much better for it. It's the foaming agent so the toothpaste is much looser and runny.
Diabetes, pain killers and a plate I have for damaged teeth that I managed to grind out (my fave pain management system it seems). It was the dental hygiene trainee at Charles Clifford that took time to explain. I don't use mouth wash that has alcohol base as that is drying too. I sip water when possible. It's definitely not as bad. I used to use the spray but don't need that now.
He hasn't replied to me. Actually Im not holding my breath. I had an autoimmune panel of blood tests - all came back negative - although I was on 10mg Pred - not sure if that makes a difference and I know they are not very accurate - but was pleased.
It may be worth getting referred to an allergy specialist.
This is a different condition I describe below but shows how tbese things seemingly start for no reason but could be hanging about for years in mild form. My older sister had never had any allergy issues (nor pred), but mid 50s went into anaphylactic shock after a bee sting. On investigation she has mast cell cytosis and has had two or three more AS and carries 2 epipens now. They said the so called birth marks on her legs, were part of that autoimmune condition. Since having the antihistamines and pred from the first episode she has lots of sensitivities to perfumes and foods. Obviously, not blaming pred or saying you have a similar condition, but these allergies can pounce on you and need some investigation.
Sorry, no, don't agree. He may have told the secretary to reply saying or he was simply short of time! He can't do the tests nor can he refer within the NHS - not his fault, the gubmint (DOH) changed the rules some years ago. All sideways referrals must go via the GP. It is a pain and adds yonks to referral times.
I was sent to an immunologist when (probably) the PMR introduced some interesting food allergies. It was slightly narrowed down to always being after a meal with red wine but she couldn't identify anything - after doing the first lot of skin tests with no result she said we could test for the next 10 years and still not find what it was and I should try taking antihistamines regularly and see if it helped. It did so we stopped worrying. At higher doses of pred it disappeared and I also gave up drinking red wine - strangely, I went off it when PMR got established. I only ever drink reds I am familiar with and that also seems to do the trick.
Sorry - you are probably right about Rod Hughes - just frustrated. So used to paying to see a doctor / specialist - but then they could spend and hour with you to get to the bottom of it and refer on immediately.
I do however feel very blessed with the NHS - as I would probably be bankrupt now and realise that GPs here are overburdened.
It definitely sounds like you need to go to the GP as soon as possible and ask for an emergency ( or at least urgent appointment ) for food and drug intolerance / allergy panel testing. You may also benefit from an appointment with Endocrinology , but they may want to rule out allergies or pathogens first .
It does sound like as your dose reduces that your sensitivity to various foods and allergens has gone into overdrive.
As others have said , keep a diary of what you eat , drink , and use ( both drugs and cosmetics and laundry products) .
If you have a reaction to something that does not feel like it requires emergency attention , write it down next to the product , and note what the symptoms were and how long it took to happen.
The timing is important as an allergen response is usually quicker than a reaction because of slow adrenals , nutrient or hormone deficiency or slow responses in the nervous system.
This sort of diary will be invaluable for you to show the GP when requesting a referral , and, in helping the Consultant assess what sort of reactions are going on.
If you are having trouble breathing and feel that your throat and tongue are swelling alot and quickly , or you get dizziness , fainting , vomiting or palpitations , don't hesitate to back to A and E again. Don't worry about using NHS funds , if you are ill that's what they are there for.
You may benefit as others have said by starting a one a day antihistamine like Piriton/ Piriteze , but I know you are concerned about this also causing an adverse reaction and are not confident to take one without supervision.
You could wait and get one prescribed at the GP via an Emergency Appointment at your surgery .
Or , as it's only Saturday , you could go via the NHS Direct call through system to an out of hours unit to see a GP there.
I suggest , in non emergency situations , the call first to anyone with Chronic Health issues because it means less time waiting in the hospital so less Fatigue and Stress .
They call you back after you explain your symptoms , usually within an hour then tell you to go to the local unit and ring through to tell them you are coming . It means when you arrive you get sent straight through via A and E reception without having to do the Triage process.
If they give you the antihistamine you can always request to try it there so they can keep an eye on you in case the is a reaction and to give you peace of mind.
Hopefully nothing will and then you can feel confident in continuing with it until you get to see your GP next week and organise the referral.
If you have any more problems over the weekend don't hesitate to post , but more importantly don't hesitate to go to get Medical Assistance.
We can advise and support you but unfortunately can't treat you and that is what you need.
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