Supporting someone with PA

[Raven321]

Hey all,

I'm new to the PA community. So I've recently made a friend who has PA and coeliac disease. What is the best way to support someone who is suffering with these conditions without becoming annoying?

All comments welcome

[Lisahelen]

Hi, welcome. Its nice that you want to try to understand someone elses problems.

Accept that like the rest of us, that person will have good days and very bad days when their symptoms are at their worst.

Read about PA from the info you can get from this forum and do the same with the coeliac society. Both are a mine of info and will help you to know what your friend can and more than likely does suffer.

Eating out will be a limiting experience for your friend with no beer. Depending how long your friend has been living with these conditions they are probably very familiar with the does and donts and i suspect all you need to do is take the time to sit and listen if you ask exactly what having them means to that person.

[Raven321 in reply to Lisahelen]

Thank you so much for your reply. I have Coeliac disease myself so I understand pretty all there is to know about that. I'm just so concerned about my friend. The thing is he is a very private person and doesn't share a lot with anyone. But he told me his symptoms (PA) are going to get worse in the near future and has decided if and when they do he will be traveling to Switzerland for the obvious. That breaks my heart and I would do anything to help

I do things out of force to help like small gestures etc because he refuses to ask for help saying it makes him feel even worse. I just wish there was some way I could make his pain less or make him feel better.

[Sleepybunny]

I wonder if he is getting the right treatment if he feels his symptoms are going to get worse.

See page 8 BCSH Cobalamin and Folate guidelines for details of UK b12 treatment.

Some people on this forum can not cope on the NHS standard treatment and resort to self treatment.

The B12 deficiency caused by PA can affect people's mood.

pernicious-anaemia-society....

b12deficiency.info/signs-an...

Has he ever thought about joining the PAS who are helpful and supportive?

pernicious-anaemia-society....

PAS tel no 01656 769 717

martynhooper.com/

There is lots of info about b12 deficiency in pinned posts on this forum.

B12 books

"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

"Could it Be B12" by Sally Pacholok and JJ. Stuart

I am not a medic just a person who has struggled to get adiagnosis.

[Raven321 in reply to Sleepybunny]

Thank you for your reply🙂. I did suggest he join the PA society but he refused. He does his own injections daily as he cant cope with just the ones on the NHS. He hasn't told anyone at work for fear of being discrimination therefore has a high workload and works full time. I also suggested he join a forum like this so he could speak to people in similar situations but he refused so I joint it myself hoping to understand the condition more in order to help him. I've recently bought the paingone pen for him, hoping it may ease his symptoms. I think I will get that book for myself thank you got the suggestion really appreciate it :).

[Raven321]

Excuse spelling errors I'm still half asleep 😂

[Lisahelen]

If he is doing them everyday i hope that he is also taking all the other things regularly to maximize the benefit of the injections. Many people, myself included struggle to get the 'mix' of cofactors just right which helps us to stay as well as possible.

Any chance you know exactly what he takes- what form of b12, any vitamins and minerals and what dose?

[Raven321]

Hi, firstly just want to thank you for taking time out to respond. I'm not sure what he takes to be honest but I know he did mention taking cofactors daily too. Is there anything that you know of that may ease the pain? Alongside the medication.Do you think the pen I bought will work on his kind of pain? I haven't given it to him yet.

[fbirder in reply to Raven321]

The PainGone Pen sounds just like an electric pain killer I bought a few years ago - and threw in the bin. It did nothing at all. But it does seem to work on some people, so get him to give it a go.

If his pain is because of neuropathy then he needs to get something that does work - drugs.

I take gabapentin for mine. If I don't then I can't sleep because of the pain and find it difficult to follow TV programs in the evening on bad days. Other drugs commonly used are pregabalin and amitriptyline.

As the GP for one of those three (they're commonly used for diabetic neuropathy, so the GP should be OK with the request). Maybe ask for referral to a pain clinic as well.

[Raven321]

I'm not sure what pain killing drugs he takes but I will find out. Thank you for your suggestions someone also mentioned a Tens machine. I wonder if that has helped anyone?

[fbirder in reply to Raven321]

You've just reminded me - I have a TENS machine at the back of the wardrobe. I bought it to see if it would help with my osteoarthritis - it didn't.

I'm charging it up now and I'll have a play with it tomorrow, although a quick read makes me think that it don't work with peripheral neuropathy. But I'm willing to give it a try.

If your friend's pain is due to neuropathy then some drugs won't work. I got nothing from ibuprofen, aspirin, diclofenac or paracetamol. Codeine did help me kip, but I wouldn't want to take that regularly (and this was in the early days, when the pain wasn't as bad) and I'm not sure it killed the pain or just made me dopy.

But a specialist pain clinic would be the best option.

[Gambit62 Administrator]

responding in response to clivealive 's prompt on another thread.

I did read through briefly this morning but had to rush to work - not sure how much time I really have now but know that another part of not responding this morning was that elements of the post touched some nerves for me.

I'm not clear why your friend thinks that his PA symptoms are going to get worse in the near future. The symptoms of PA are the symptoms of the B12 deficiency he is causing and if that is being addressed - albeit by having to resort to self treatment - been there done that - the symptoms should not get worse - though if there was permanent nerve damage they may not get any better.

I suffered over 40 years of depression and anxiety and thought it was nothing to do with B12. Things definitely got a lot worse for me in the 10 years before I was finally diagnosed - the diagnosis was as a result of fall in which I broke my ankle and needed to be hospitalised to have it pinned. I had absolutely no idea what the significance of being told my B12 levels were low. My GP was no use on that front - and my symptoms were a lot worse and continued to get worse after I was discharged from hospital - after an initial loading dose. Unfortunately I am at the extreme end of a response to high levels of B12 in serum which means that unless my levels are astronomic not enough gets through to the cells where it is needed. For me that means I last less than 24 hours after an injection before all the symptoms start coming back. It took me 15 months to figure out what B12 deficiency was all about and that I really was struggling with the normal treatment regime - even though I was on 2 monthly maintenance - a long way off what I actually need.

My mother has similar problems with needing to keep B12 high or she's just asleep on the couch all the time. My brother and aunt use nasal spray in much lower doses than either of us but also don't have a formal diagnosis.

Whilst I was sort of coping with the anxiety and depression - all of which was being put down to trying to cope with the fall - by using mindfulness techniques, things for me were definitely getting worse not better. I was also suffering from huge amounts of pain when I was walking, finding that I really felt very wobbly on my legs (though ironically less so on a bicycle or when I was doing the 'controlled fall' that I call a run - in the case of run that was probably to do with momentum). I had no idea where my bottom was when I was going to sit down so had to feel for where the chair was. I was starting to experience mild psychosis and really couldn't cope with being in a crowded space. I had to completely rethink how I travelled to work and used mindfulness to navigate to work using patches of green and had to focus on what was fixed in the environment rather than focusing on what was happening around me in terms of what other traffic was doing - I was using a bicycle. I had no energy and the feeling that life was an existence not a life was just building up again and I was definitely moving towards ending it all.

I got nowhere with my GP who thought that they had caught the problem early because I wasn't showing any signs of anaemia. So, I was left with treating myself. I'd ordered some phials from Germany and started using a nasal spray whilst I was waiting several times a day - and the balance and energy started to improve in a way I hadn't experienced before - I'd noticed a slight improvement for a short period of time after maintenance shots but this was sustained. 3 weeks later I was quite happy at the top of a ladder pruning my grape-vine and then a few months later I realised that my depression and anxiety had gone.

Now I don't know if you friend is depressed as well as in pain. It may be that injecting daily still isn't enough to keep his B12 levels where they really need to be but i now have a life for the first time ... probably ever so things really can turn around if you have the right treatment. I still have some neuropathy but its very rare to get the levels of pain in my feet that i was getting ... and my back is a lot stronger so not getting lower back pain in the way I did.

If your friend is depressed (which actually would make it unlikely that he would be able to get the treatment that he feels he wants in Switzerland) then that is going to make things so much more difficult. It is very difficult to talk about depression when you are depressed because it generally tends to be that people focus on wanting to 'understand' but actually you can only understand depression from the inside and most people who are depressed really wouldn't want anyone else to feel the way they are feeling. The people that really helped me were those who admitted that they knew they couldn't understand how I felt but if I wanted to talk I could. I used to find poetry really helped me - some of it was really dark but people would react to it in ways that were just getting worried about me which so didn't help.

It really is quite difficult to suggest what you can do - all you can do is be there and let him know you are there - if you want to show him what I've said about my experience that is fine.

For the record I use a mixture of different types of B12 because different ones work with different symptoms. Methyl (2.5-3mg) is good for sleeping and feeling the sole of my left foot, adenosyl (3mg) is good for incontinence and mood and hydroxo/cyano is good for just keeping the general stuff and the mood ticking over (1-2mg) - most of mine is taken nasally (though the adenosyl is a sublingual) and I tend to inject about 4 x a week - subcutaneously.

If I forget to take anything for 12 hours then I start to get really cranky and run out of energy big time - struggling to walk - and I can't stand being around a load of people because it is like everyone is shouting at me. I also get a huge amount of pain in my ankles when I stand up.

[clivealive Forum Support in reply to Gambit62]

Thanks for that Gambit62 - your "story" makes me realise and appreciate just how lightly I have "got away with it" for the last 45 years.

I was very fortunate that despite having to give up my career as an electrician for a more sedentary job the Government retrained me in accountancy and got me to be one of the first "Registered Disabled" in my area which gave me some employment protection for 27 years.

I have been blessed in having two wives who "bore with me" in my inabilities to "do things" due to lack of energy caused by the P.A..

My first wife (of 27 years) Valerie died undergoing heart surgery 24 years ago this month and my second wife Gillian and I celebrate (God Willing) our 20th anniversary in October and I am grateful to them both for their tolerance.

I wish you well Gambit.

[Raven321 in reply to clivealive]

Wow Clive it's so nice to read that you are celebrating your 20th wedding anniversary many congratulations!

My friend has resorted to a life alone sadly because of his illness. But it's nice to know you are not letting your illness define who you are and you are living life as much as you can I.e getting married etc.

Best wishes Raven

[Janeylou69 in reply to clivealive]

Hello clivealive ,I just wanted to ask you a question about pa ,I’m 39 and I’ve only just found out that I have it and leading up to it I’ve lost lots of weight ,I’m really worried,I haven’t started my injections until the 21st may ,I don’t know what to think xxx congratulations to you on your 20th wedding anniversary xx

[clivealive Forum Support in reply to Janeylou69]

Hi Janeylou69 on 10th May - five days ago I celebrated the 46th anniversary of my P.A. Diagnosis and I'm still "clivealive" and coming up to 77 next month so you can be assured that with treatment there is life after Pernicious Anaemia.

If you are in the U.K. treatment is by alternate day injections of hydroxocobamalin B12 injections (which are normally quite painless into the muscle of the upper arm) for two weeks or until there is no further improvement in any neurological symptoms you may have. These are called the "Loading Doses"

You will then be put on a maintenance schedule of injections of, if you still have neurological symptoms an injection every eight weeks for the rest of your life. If you have no neurological involvement they will be every twelve weeks, also for the rest of your life.

It is also important that your Folate level is monitored as this is essential to process the B12.

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

Replacing B12 with your injections will lead to a huge increase in the production of blood cells and platelets (which occurs in the bone marrow) and can lead to rapid depletion of folate and iron stores; this can then limit the expected recovery of Hb. Both iron and folate may be needed and your doctor may have checked this - ask him if you are not sure.

It is not uncommon for some symptoms to appear to get worse before they get better as the B12 that is going to be injected starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with.

I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.

A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery.

Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.

Remember I am not a medically trained person but one who has had P.A. for a long long time.

I hope this helps and wish you well

.

[Janeylou69 in reply to clivealive]

Thankyou very much clivealive for your reply ,it has helped a lot ,I’m just so depressed and I was eating and still losing weight that’s why I’m so worried ,I feel like I’m going deeper into a black hole ,I have 3 young daughters and two older sons ,to think that something bad is happening to me just makes it so much worse x

[clivealive Forum Support in reply to Janeylou69]

In view of your weight loss worries I suggest you ask your doctor to refer you to a dietitian.

I wish I could transfer you to mine who is an absolute gem.

I had gastric surgery in 1959 and have have has digestion problems ever since and in the last twelve months have dropped a stone from 13 to 12 which with my height at six feet four inches places me at the bottom of being ideal.

My dietitian "instructed" my surgery to have a "faecal elastase" test which revealed a "moderate pancreatic insufficiency". She said that I had probably had this "problem" for the past 59 years since the removal of two thirds of my stomach due to a perforated ulcer and again "instructed my doctor to prescribe enzymes to aid my digestion and hopefully put back some weight. I guess it's better late than never!

I'm not saying that the above is your cause of weight loss, more to show you the value of going to the "right people" for advice and help.

No doubt you are "guilty" of skipping or skimping your meals whilst looking after your family so it would be a good idea to write down a week's meals to see just exactly what your diet is. (A dietitian would ask you to do this before seeing you) Maybe show this to your doctor when you ask to be referred.

Stress and worry uses up B12 quickly so try not to fret - the injections will cope with the Pernicious Anaemia but you will need to be fastidious about ensuring you get them regularly and on time. I think that in forty six years I have only forgotten an appointment on two occasions and a quick 'phone call got me fitted in the next day.

If you have any more questions don't hesitate to come back but please remember, I'm not medically trained so you must be guided by your doctor.

[Janeylou69 in reply to clivealive]

Hello clivealive ,I lost a stone in a month and I was eating ok at first , started feeling nauseous quite a few months ago but don’t know if that’s to do with the pernicious anemia ,low b12 ,low vit d ,the doctor doesn’t seem to think it’s any thing alarming but I’m not sure ,I’m really worried ,it’s affecting my whole life ,I sit there thinking about it all the time to the point where it’s driving me insane ,I’m in the uk in Portsmouth and I would like to know if you know anyone that I can go and see about all my health issues who knows more about all this ,coz doctors Just haven’t got enough time to sit and talk about it all ,i can’t cope anymore ,I really need help xxx

[clivealive Forum Support in reply to Janeylou69]

I honestly don't think your weight loss is attributable to the P.A. - more likely it is poor diet or some other reason. As I said above your best bet to start with is a dietitian which your doctor should be able to arrange under the NHS - as was mine.

[Janeylou69 in reply to clivealive]

Thankyou clivealive I will see what my doctor says about that ,I still have to go for a liver ultrasound which I’m very worried about too ,it just seems it’s one thing after another thanks for your info xxx

[topher2018 in reply to Janeylou69]

I know this post is old but I just found it. I also started losing weight at an alarming rate around the time I was diagnosed earlier this year. I lost about 20 lbs in a couple months despite eating as much as I could. I had cut out most carbohydrates as part of the autoimmune protocol diet. The weight loss stopped and even reversed itself a little bit once I started taking HCl pills. My theory is that my body wasn’t able to process and derive nutrients from the food due to low stomach acid. Doing much better now with taking the pills. And I take them despite also being on blood thinners because the risk of bleeding is better than continuing to not being able to digest food - which, in addition to weight loss, may also have a connection to all of the food intolerances I had developed.

[Janeylou69 in reply to topher2018]

Hi thanks for your reply my doctor told me I more than likely had pernicious anemia but I had a gastroscopy and they didn't find anything and didn't say if I had pernicious anemia or not so I'm confused ,but I had a ultrasound of my stomach other organs and I've got a slightly swollen spleen, a fatty pancreas and very small stones in my gallbladder and I still feel unwell and I've lost nearly 3 stone since April but my doctor thinks there's nothing wrong with me ,what do I do x

[Raven321]

Thank you Gambit62, your post is so touching. I'm so sorry you've had to suffer so much. I can't understand why the doctors take this illness so lightly it's infuriating!

I'm glad you seem to be in a better place then before. Your advice is appreciated greatly. I have ordered the book by martyn hooper to gain some more insight into everything. I have also bought the pain gone pen to see if that may help ease his symptoms.

I guess the best thing I can do is stay patient,positive and be there for him. It's hard to stay positive when the other person is all doom and gloom but I understand how hard it must be to let someone in when you have suffered alone for so long. I don't intend on going anywhere will be here for him always. Thanks guys

[Sleepybunny]

Hi,

I guess you bought "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" which is his most recent and has info on BCSH Guidelines.

Martyn has written other books. There is one "Living with Pernicious Anaemia and B12 deficiency" which made me cry because reading the case histories was like reading about myself.

[Raven321]

Hi sleepy bunny, do you also suffer from PA?

[Sleepybunny in reply to Raven321]

I do not have a confirmed diagnosis of PA although one person i saw thought i might have Antibody Negative PA.

Several years ago I was diagnosed with B12 deficiency (not due to diet) but IFA test was negative.

At the time I had multiple symptoms typical of B12 deficiency including neuro symptoms. Had one set of loading injections then nothing else, eventually after requests for more B12 treatment were ignored I started to treat myself and guess what ...some of my symptoms disappeared.

I have had several difficult experiences with doctors that I found traumatic and made me feel I had to solve what was making me ill on my own. I sometimes wonder if I have mild PTSD as a result of these experiences.

That was extremely hard to cope with, to feel that the GPs, whom I had always trusted, did not appear very interested in really listening to me or finding out what was wrong with me. I think someone said on an old thread that coping with the disinterest of doctors was harder than coping with the illness and I fully agree with that. I was told it was depression, all in the mind etc....

I do understand what it is like to feel very isolated even among those you are close to. Not everyone in my circle has fully understood what I am going through. In some ways I am a victim of my ability to put a brave face on things. A lot of people don't even realise I am ill because i don't look ill.

I have never had someone who was willing to speak up for me, when faced with GPs and other consultants who did not understand and on some occasions were aggressive. i think it's great that you want to be supportive to your friend.

[Raven321]

Hi sleepybunny, I am so sorry you have had to deal with so much. It really is so upsetting to read posts like yours.

I hope you are in a better place now. Perhaps putting a brave face on all the time isn't such a great idea. I think most people are just ignorant unless they have suffered the same themselves. If you say I have B12 deficiency, they simply think o your aneamic and need some vit tabs. That's as far as most people's knowledge goes on this subject.

Something really needs to be done in order for doctors to actually listen to the patients and not fob them off all the time. That really is the biggest shame

I hope you have good family and supportive friends and it's ok to reach out for help. Were all human no one is invincible. This forum is a great place for people to help each other. Thank you for your post and all the best.

Raven

[Sleepybunny in reply to Raven321]

Hi,

The reason I talked about my experiences is that I thought it's possible that your friend has had similar difficult experiences with medics .

In the end I just learnt to nod, not say anything and realised that the only person who was going to help me was myself. For a long time I lost the will to continue to fight to get answers.

Eventually after I had learned more about b12 deficiency and PA, looked at my medical history and realised how b12 deficiency fitted my pattern of symptoms, I became angry that I had not had the treatment i feel I should have had.

I no longer feel angry but just sad and wistful that the outcome for me could have been much better and determined to help others get the info they need

I have of course had lots of help and support from this forum for which I am truly grateful.

[Raven321]

I'm glad this forum has helped you. Your post and advice is always helpful. I find it so difficult to get through to my friend which is why I joined this forum. I feel totally helpless and it's hard as I have to keep a brave face on for him and stay strong and positive.

[Raven321]

Hi guys, just so you all know the pain gone pen did nothing for him .

But I'm hopeful with the right medication and support hopefully he will start to see things from a different, more positive perspective.