I've woken up ,that's a lie I've hardly slept, with tonsillitis. Had it more or less permanently as a teenager. As I've been told not to take anything more than paracetamol as a painkiller. Should I bother with the docs. As a child I used to be given antibiotics as a adult I was turned away. But having this PBC rubbish I was just wondering if I should bother.
I have a autoimmune disease does that make me have a weak immune system. To be honest my docs are pretty rubbish and know less than me about this condition.
Diagnosed 1st December and still waiting for my 3 month appointment with the specialist.
Had to ring in work to say I'm not going which I hate doing.
Any advice greatly accepted
😊
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Louedwards
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You sound very alone , do get in touch with the foundation and talk to them they are very helpful and am sure will give you advice how to approach this one with dr etc. Every one is different but it seems we all have to find a strategy that suits us in these situations. Hope the day gets better and you are able to get some sleep , lack of sleep does not help anyone.
There's just one thing....if you have an autoimmune condition, it means that your immune system is generally not weak, but too strong -it is on the attack constantly which is why we often feel so tired. However there are many parts of your immune system, so the part that deals with your infection may be overwhelmed. It might be worth trying something like acupuncture to help?
I have just had a strep throat and used a spray that I bought from the chemist.
Ultra Chloraseptic anaesthetic throat spray. You could ask your local chemist if it is contra indicated for your set of conditions. For myself I did not have a problem taking this and it helped clear up my condition in a couple of days.
It seems to be against general practice to give out anti biotics these days but if it is a bacterial infection you may need some help. Apparently only tests can determine the difference between a virus or bacteria. Gargling with salt water on an hourly basis (not pleasant) can be effective and some throat lozenges can help soothe the discomfort (although they are full of sugar which is not great). I also like hot (not too hot of course) honey and lemon even when it is difficult to swallow.
When you feel better it may be time to have a look around for a more supportive doctor in your area meantime The PBC Foundation cam be very helpful, their new website is quite easy to look through.
I also have a link which you might like to look at, it gives some home help remedies:
This is just to second the above comments, especially from Butterfly. Also to add that if you click on the 'PBC Foundation' logo at the top of the page, that will take you to their website, where you will find phone numbers and email links to talk to their lovely trained advisors. The site had loads of up-to-date info, and if you join (it's free) you get lots more links, plus a compendium about PBC that covers much that you need to know - you can even get some bumpf to give to your GP. NB avoid much of the general online info on PBC - until you understand your own current state with PBC - as much of it is out-of-date and overly scary.
If all the medics in your GP practice are hopeless, then yes, consider moving practice. But is there another GP at your centre, who might be more up-to-date? You can see anyone there. Also, do you know exactly what tests they have and have not done? You have a right to have copies of tests results - though you may have to pay for photocopying - so maybe ask for them ... perhaps once you've talked to the PBC Foundation people, then you can get back to the PBC F with your results. Also, have you seen a specialist yet, or are you still waiting for a first appointment? It's worth checking if they are a liver specialist (hepatologist), and if they are familiar with PBC; general Gastroenterologists will know less about PBC. Again, you can ask to see a specialist who is more appropriate to your condition - but it can take time.
Above all, try not to worry - easier said than done, I know - but it helps to concentrate on having fun, looking after yourself, and getting exercise, good food and doing things you enjoy - lots of guidance on diet and exercise on the PBC F site. Living life to the full and cutting stress helps us to fight back against autoimmune conditions.
With my autoimmune disorder I have been told by my doctor that for any fever above 102 and for any infection that requires antibiotics to call or go to hospital. Especially with a weak immune system. Some germs can cause havoc. Hope you feel better. Safe is better than sorry.
Been to speak to pharmacist. Had to sit on a chair look like death warmed up. She gave me lozenges which have done nothing and paracetamol. Said is gets worse or not gone in couple of days go to docs. But they don't tend to give out antibiotics anymore. So what's the point. Other then it'll help me get back to work.
Fed up in Bath trying to warm up and I'm aching all over. Poorly girl. Now I know what man flu feels like 😆
Its hard when you have any new diagnosis, especially one that is so misunderstood. There are leafelts available that you can get from the foundation, so you can make sure your doctor knows a little about PBC, but on the whole, the education of many GP's is quite sketchy.
When we have a serious illness, it tends to make us worry whenever we have another illness, but we have to remember that especially in early PBC, we can have other illnesses alongside PBC that aren't related whatsoever, so you could have tonsillitis and it will need treating as such. Obviously only a gp can tell you if you have a virus (for which they cant really give you anything) or a bacterial infection (for which you might need antibiotics)
PBC doesn't give you a weakened immune system in itself, but if you are also suffering from depression, or anxiety this can lower your immune system but can also leave you feeling less able to cope with other symptoms like a stinking sore throat etc. Also if the PBC has led to liver damage / cirrhosis, then this can affect your immunity, and also if you are taking steroids or other immunosuppression for other illnesses, this can also lower your immunity. But PBC especially in the early stages won't. Also an auto immune disease doesn't mean that your immune system is too strong as such, it means your immune system is faulty! Different auto immune conditions are caused when the fighter cells attack those particular organs. Its not an all or nothing thing.
Keep an eye on your temperature, and keep an eye on your throat, if things get worse, you really should see a gp as tonsillitis can cause problems if not treated, though it often gets better on its own and is often why they don't use antibiotics. If you do speak to someone at the foundation, or in person, remember we all have different stages to our disease, diff things work for us all. My pet hate is when people set themselves up as experts claim to be trained in PBC but don't even have the disease, so really don't understand how we feel. I hope you feel better soon.
Hi lou - sorry to hear you have PBC like the rest of us here. It is a mysterious condition and very worrying especially when you are newly diagnosed. Most people, including GPs, don`t understand it and all I got was "you look really well" as if it was in my imagination (if only).
Whilst your immune system should not be affected by the PBC itself, it could well be lowered by the stress of the diagnosis - I experienced lots of stress symptoms when I was diagnosed 2 years ago.
If the pain in your throat is keeping you awake at nights, you should definitely see a doctor as you have enough to cope with at present without sleep deprivation.
Remember GPs can be a bit defensive because this is a very specialist condition and they have to come to terms with the fact that they just don`t know and the patient is likely to know more than they do. You will have to help your doctor through this :-).
Follow the good advice here and join and consult the PBC Foundation and keep in touch and let us know how you are - we really care. Best wishes Diane
So sorry to hear about your problem. I, too, have had lots of issues with tonsils, although not related to my PBC. However, my ENT insists on removing my tonsils in the next 2 weeks! (I'm 66!). Does anyone know if there is anything PBC related that he should know about as my surgeon? I am filled with dread!
Wouldn't say it's related you my PBC either I struggled with tonsillitis as a teenager. But they wouldn't take them out. Said I'd still suffer anyway. Not had it for about 15 yrs but it's floored me today. Paracetamol takes edge of for about a hour. I had a lovely icelollys which worked alot better than these lozenges they gave me at the chemist. If no better tomorrow I will visit docs. Can't keep having time off work it's ridiculous.
I was diagnosed Dec 1st early stages. At first I couldn't get it out my head. But I have come to terms with it. I'm not stressing or depressed. Just that u was told to take paracetamol only and it really doesn't to much. They said antiseptic spray wouldn't really work as it only one side sore inflamed and full of white stuff. Mmmm nice 😊
But thankyou for all your kind words always appreciated
Hi Louedwards, hope you feeling better. I think you should see a Ear,Nose &Throat specialist & be assessed for possible tonsillectomy if this is in fact due to your tonsils. Constant infection requires constant exposure to antibiotics, etc--- very hard on the body---get rid of the source of infection! Btw, how do you / doctors know this isn't a strep throat , & maybe communicable? Seems very odd that Doctor won't treat infection. Time for new doctors if you don't have confidence in who you currently see. All the best.
It is tonsillitis I suffered as a teenager. I have spoken to a doctor this morning on phone. I didn't warrant a actually appointment. He prescribed me codeine to help with the sire throat headache and aching. Doctors don't prescribe antibiotics in the good old UK for tonsillitis. Apparently people became immune to them??? Because they're used to much.
Slightly worried that he said I would be OK with codeine as it not as if I have liver disease or anything????? I thought I did with PBC hence why only took one instead of 2
I really have no idea . Says I should feel better by end of weekend amazing more time of work then. I really don't feel well or have the energy. Plus codeine making me slightly drowsy 😐
I am prone to throat infections and always have anti biotics at the ready to take which generally clears it quickly and prevents a chest infection. However after taking one penicillin tablet after a tooth extraction recently I suffered an acute allergic reaction which was quite scary! So maybe I have taken too much penicillin and will now pay the price!
My twin and I both have pbc anti bodies but no symptoms yet. We r 63 and take part in twin research to hopefully help others with this horrible disease one day.
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