Apple Cider Vinegar and Aloe Vera juice

[SusyTe]

I am sure this has come up before but I was wondering about trying Apple Cider Vinegar and/or Aloe Vera juice. I have read that they can help you taper steroids as they are good for the immune system. But equally I am not sure we are supposed to boost the immune system while on Pred? Bit confused - wondered if anyone out there has experience and thoughts on these two. Any advice gratefully received. I am on 10 mg of Pred and would really like to reduce. Am on MTX as well - not sure if that is doing anything other than give me hair loss but am too worried that if I come off it I may not be able to reduce the Pred without a flare. Going through a very stressful period with work and family at the moment.

[Margaret1951]

Oh dear Suzy , I have never had hair loss like others, I just grow beards and moustaches !!have heard how good this aloe Vera is supposed to be and apple cider vinegar.will be nice if someone has an answer.

Please don't get to stressed, not worth it, I should know and others 😇

[SusyTe in reply to Margaret1951]

Thanks for replying, Margaret. Since starting on MTX my hair has thinned dramatically - it's coming out on my hands if I run my hands through it and when I wash it. I am taking Biotin to see if it helps. I do have wonderful sideboards 'though - delightful - to go with the chipmunk, hairy face! Won't bore you with my problems - just have to hang onto "this too shall pass" but it is pretty stressy in the meantime.

[PMRpro Ambassador in reply to SusyTe]

I found my epilator was my friend for the sideboards! Bit nippy the first time or two but it worked a miracle - I looked totally different minus black fluff! They do make a version specifically for the face now.

[SusyTe in reply to PMRpro]

Never thought of using my epilator on my face, PMRpro - thanks for the tip. I think mine has a head for the face - will investigate.

[Margaret1951 in reply to SusyTe]

Oh dear bless you , hate it if my hair come out ! Must be awefull worrying! Would be nice though if our facial hair came out 😂

[SusyTe in reply to Margaret1951]

I think it just adds to the sense of loss and mourning for the person I was before PMR, Margaret - if that doesn't sound too pathetic. I look and feel like a different, much older person - I am 54 - I think PMR and the drugs have aged me by about six years. I am having to give up my job at the end of September - can't carry on - after 34 years with the same boss. I am relieved to be leaving so that I can concentrate on my health and he is very demanding man to work for - but it will be very strange and another loss of part of my identity - I also can't imagine not having a salary. Thank goodness I have a wonderful hubby, a great rheumy and a marvellous counsellor to talk to - plus all you lovely people on here. I think I might lose the plot if not.

[Margaret1951 in reply to SusyTe]

Hi Suzy, you do NOT sound pathetic at all so please don't think that. I am at the moment feeling low because pains and soreness are back this afternoon and I don't know why .I agree how we feel older and can't do what we used to. I was so active and alert before all this like many others. My main enjoyment is taking my 2 chihuahuas round the field at the back of me, 3 times a day as I HAVE to get out of my house, walls walls walls !! I am glad they walk slow with me bless them, they seem to know 🐶

I moan most of the time so please feel free to join me 😕

[SusyTe in reply to Margaret1951]

Thanks, Margaret. I am sorry to hear you are feeling low too. I hope your doggies can cheer you up. Thanks for listening to my moan. x

[Margaret1951 in reply to SusyTe]

Moans are what makes us feel better Suzy . My PMR has for some reason been bad today and not done much at all ! I always feel down with the flare ups but still try to keep a smile 🙀Time to see the Doctor now as had enough ! Keep smiling even though we don't feel like it then when on our own we can cry 😭

[SusyTe in reply to Margaret1951]

Thank goodness we are all here for each other, Margaret! I hope you can have a relaxed, quiet evening and get some restorative sleep tonight so that tomorrow could be a better day. Keep smiling - yes, we Polys are strong and put on a brave face. Normally the only person who sees me cry is hubby. x

[Margaret1951 in reply to SusyTe]

Hi Suzy, I don't like anyoneto see me cry for some reason,my dogs get quite upset and keep kissing me.

I have thoughbroke down many times in front of my doctor but he is so nice and understanding. I always know when I am going to have a bad day, I get very low and tearfull.i don't go bed till 12ish but am so tired in a morning and don't want to get up !! I will give you a laugh, when my phone alarm goes off at 8 every morning al I can see is a furry toy bobbing up and down at the side of my bed !! My Angel knows I wake up then lol 😂 she won't stop until I get up bless her, but Monty will stay in bed all morning if I let him !

[SusyTe in reply to Margaret1951]

I think we have been brought up to have a stiff upper lip, Margaret. Gosh, you go to bed late - I am dead on my feet by 9 or 10. My alarm goes off at 6 'though - ugh. So sweet to have a little furry person waiting for you to rise! And a little one that you have to wake up. Bless. x

[Margaret1951 in reply to SusyTe]

Must admit it's not by choice,I am just not tired, have tried going early but just lay there and toss and turn.when I was active before all this I could go early but not doing much now I just don't get tired until the morning.whenI was on 60mg preds originally I burnt out about 8.30 at night but was in the gardenat 5 in morning trying not to disturbthe neighbors !! Now it's the opposite , gawd I am gettingold and grumpy 😱

[Sandy1947 in reply to Margaret1951]

Your post resonates with me! My enjoyment consists of the calming effect of my 12 yr. old blind, arthritic, sweet Coton rescue. We walk around the block once, then I push her in her new over the top doggie stroller. As a financial advisor, I'm always looking for value. But I splurged ($ 108) on the buggy and it was worth every penny!

[Margaret1951 in reply to Sandy1947]

Hi sandy, I am ordering one of these off eBay this week !!! £35

My friend has one for her chihuahua, my 4 1/2 year boy gets bad legs so hence buggy so I can still go out.

[SnazzyD in reply to SusyTe]

Well done for making such a bold, positive move for you. Of course it's scary but leaving a workplace that drains you can only be good. I'm same age, facing radical changes too and loss of identity. What makes me laugh is the feeling of a new start, new me, jumping into a car to make a triumphant drive out of town into the sunset...then the engine doesn't start. Oh, maybe tomorrow, let's have a nap then.

[SusyTe in reply to SnazzyD]

Sorry to hear that you are going through it too, Snazzy, although you did make me laugh. I have friends and colleagues saying to me - how wonderful - retirement - exciting times ahead for you! And all I can think of is sleeeeeeeeeeep. x

[PMRpro Ambassador in reply to SusyTe]

Seems fair - after all those early morning commuting you must have a fairish sleep debt to make up!

[Sandy1947 in reply to SnazzyD]

I am vascillating about my work. 6 weeks into PMR I was ready to sell my business. Thought I had a buyer and the deal fell through. I felt a bit better (with lots of help from forum friends) and decided to sell some of it and keep some. I work with urban school employees in very rough neighborhoods. At 69 PMR is a warning that I am vulnerable in these bad areas. This summer I have worked from home, answered client calls and did what I could. Sometimes it was exhausting sometimes it was fun and productive. I'll just continue like this until a buyer comes along and I see how I feel over time.

Loss of identity defined by my work is frightening. I know I am enough just as I am now and I have enough. These lessons take time to integrate.

[DorsetLady PMRGCAuk volunteer in reply to SusyTe]

Hi SuzyTe,

I've just come from hairdresser, and reading your post hoped this might help.

She said today completely out of the blue "your hair's in better condition than it's been for years, even when you were at work"

Well, I started worrying about my husband in 1995 when he had his first heart attack (he died in 2013) took earlish retirement in 2006, ill for 18months pre diagnosis, on Pred for 4.5 yrs - now off now for 12 months - virtually all the time I've known my hairdresser.

We both agreed that stress had been the overriding factor in my life during that time

In her opinion, Pred can affect the colour (if it's out of a bottle) or permed, but generally it makes your hair grow thicker, not the opposite!

I realise we can't eliminate stress completely, and I don't want to sound trite - but it you can reduce it as much as possible your hair as well as everything else will thank you for it!

My life's not perfect now, don't get me wrong - I'm widowed (which I don't like) and I have arthritis which is a complete pain in the butt (not literally but metaphorically) which hampers things somewhat - but I'm not stressed. I've just turned 70, not too keen on that either, but it's only a number!

All I want to say really is life will get better, even though you cannot see how at the moment, so keep believing.

Take care.

[SusyTe in reply to DorsetLady]

Thank you, Dorset Lady. I am pretty sure it is stress but also the MTX that is making my hair fall out. Would like to stop it and just take the Pred but not seeing Dr Hughes until September and wouldn't do that without his advice as I am too worried about having a flare. Anyway, I really appreciate your reply - it does put my problems into perspective and also gives me hope for the future. I have a 91 year old father with dementia and a 60 year old sister who has just had a major operation and has health and other issues. Both of them live alone - although my father is in assisted living - and are 2 hrs away from me so at present I am working during the week and then driving up the motorway to look after them both at weekends. Once my sister is back on her feet in a month or so's time and can help with my father again and I am no longer working hopefully things will calm down a bit. I should be able to go up there for a few days during the week and still have weekends at home with my hubby. It is a question of finding a balance and ways of handling the stress.

Congratulations on your recent milestone Birthday! I hope you had a marvellous celebration. Thank you for being so caring and such an inspiration.

xx

[DorsetLady PMRGCAuk volunteer in reply to SusyTe]

Bit more subdued than they used to be! Probably just as well!

But will make up for it later in year - my daughter is 50 on 28 Dec (not very good planning on my behalf all those years ago) and I'm going to NZ to visit for Xmas/New Year and beyond! Heaven help the S-I-L is all I can say!

No wonder you are stressed, but hopefully as you say, things will settle a bit in near future. Wish you well.

[SusyTe in reply to DorsetLady]

That sounds like a wonderful trip! I am sure S-I-L will cope.

Thank you. I wish you well too.

x

[Margaret1951 in reply to DorsetLady]

DorsetLady, I thought you were going Venice !! You can dry your washing fine over there.

I like you lost my husband to lung cancer 18 years ago and still feels like yesterday, time flies but not the heart. X

[Sandy1947 in reply to DorsetLady]

"Life will get better, even though you cannot see how at the moment, so keep believing." This spoke to my heart! Thanks Corset Lady!

[DorsetLady PMRGCAuk volunteer in reply to Sandy1947]

Hi Sandy

See you've renamed me - love it! Made me LOL. So would my late hubby - but best not go there on a "family friendly" forum!

Just hope a certain someone doesn't see it!

[Seabyrd in reply to SusyTe]

When on MTX I had hairless too but I took over the counter Biotin and also prescription Folic acid and it stopped... my hair loss started with the Prednisone and got worse with the MTX added... had to stop MTX as it make me quite sick.

[SusyTe in reply to Seabyrd]

Thanks for replying, Diane and welcome to this wonderful forum. I do take Biotin every day and also Folic Acid as prescribed to take the day after the MTX. Have decided to stop the MTX - one horrible drug is enough for my poor old bod to handle, I think.

[PMRpro Ambassador]

Try anything you like - but I doubt it will make a lot of difference! I think HeronNS has been taking aloe vera and wonders if it has helped - someone else tried it and it didn't.

But no - you don't really want to take something to stimulate an already disordered immune system. You are already taking 2 substances to suppress its action!

We all want to get off pred - but nothing will achieve that until the underlying autoimmune disorder that causes the symptoms has burned out and gone into remission. And all the vinegar and aloe vera in the world won't speed that up.

[SusyTe in reply to PMRpro]

Okey dokey, PMRpro - thanks. I thought it probably wasn't worth it but sometimes I feel like clutching at any straw that is offered. Hey ho - this too shall pass. Hopefully once I have stopped work and can rest more that might help in some way.

[PMRpro Ambassador in reply to SusyTe]

I'm pretty sure it will - being retired and no income isn't as bad as you think. Honest

[SusyTe in reply to PMRpro]

Thanks, PMRpro - I think I will have to get another job at some point in order to stay living here, but will concentrate first on trying to get better. Looking forward to the rest 'though!

[PMRpro Ambassador in reply to SusyTe]

Is freelancing or part-time locally an option? Taking the commuting out makes a massive difference.

[SusyTe in reply to PMRpro]

I am certainly going to look at those options, thank you. I would like to get more involved in the local community too. And maybe join a local book club or walking club. I used to row with a club locally and loved being on the Thames but that is out of the question now.

[Sandy1947 in reply to PMRpro]

This advice speaks to me as I grope with thoughts of retirement. I'm not one with lots of hobbies. I love cooking, food shopping and running my seasonal charity...distributing gowns and accessories to urban teens and women and scholarships to students who do community service with the organization. I also love Zumba (now 20 mins). I am trying Tai Chi this week and water aerobics when I feel strong enough to take off a tight wet bathing suit!

Loss of identity, helping people save for retirement and doing something I'm really good at is hard to give up! I have however, been trying to sell part of it just prior to PMR diagnosis.

[SusyTe in reply to Sandy1947]

Sandy - you sound like you have a LOT of hobbies to me! x

[Sandy1947 in reply to SusyTe]

Most fun is food shopping. Buying hemp and chia seeds, and chickpea pasta! Big excitement!

[Hidden in reply to SusyTe]

hi suzyte

I am 56 now and had to give up work a while ago due to non PMR issues. It's weird at first especially if you have been in high stress busy job with long hours. But at least you can put what energy you have into you and things you can do and want to do. Losing my profession and the wage that went with it as a single person was devastating until I decided that I would just have to stop stressing. It would be nice if I could dip my toe in paid work but each year seems to brings another condition and the culmalative effect prevents that. But I am now able to see that I would probably be even worse if I had tried to drag myself to that job...200 miles drive which meant gettingnup at 5am and returning home at 8pm. not good for anyone. So relax into this period and you may be able to get into doing paid or unpaid work if You want to buy health first.

[SusyTe in reply to Hidden]

Gosh, I thought my commute was bad! Yours must have been totally exhausting, you poor thing. I am so sorry to hear about your situation - I do hope things improve for you. Thank you for your kind and encouraging reply.

[HeronNS]

I took aloe vera gel, and it seemed to make the next couple of tapers (I'm in low single digits) go very smoothly, much more smoothly than a couple of previous attempts. Then I bought aloe vera liquid and it seems to have given me no help at all. So whether the first was just coincidence and I was ready to taper then, or whether it really helped I don't know. I'd recommend giving it a try. It's possible it helps with pred withdrawal more than with actual PMR. Some people have talked about the taste. The gel is very innocuous, but the liquid is a bit sharper and needs to be washed down with water, or it can also be mixed with juice. But in my limited experience there may be something present in the gel which isn't in the liquid, so I'm not buying the liquid again but have started a new bottle of gel. It comes from Texas and has no added flavourings or other chemicals.

[SusyTe in reply to HeronNS]

Thanks, Heron. I had looked at the Lily In The Desert gel and also Aloe Vera juice but then read something about the carrageenan in the former being really bad for health and encouraging inflammation. It is so difficult to know what to believe and try.

[PMRpro Ambassador in reply to SusyTe]

As a totally cynical sceptic - I find it quite easy ...

[SusyTe in reply to PMRpro]

Ha - I had a feeling you would say that - but then you are a PMRpro! 😉

[Slosh in reply to HeronNS]

Hi - is it the Forever Young brand?

[SusyTe in reply to Slosh]

Not taking any of it at the moment, Slosh.

[Slosh in reply to HeronNS]

Hi HeronNS - did you take the Forever Young brand by any chance?

[SusyTe in reply to Slosh]

I think Heron took the Lily Of The Desert brand - I seem to remember seeing that somewhere on here.

[Slosh in reply to SusyTe]

Oh ok - thank you.

[HeronNS in reply to Slosh]

Lily of the Desert, as SusyTe said. I've recently seen an organic version as well. I think it's the only kind available in my community. I don't shop on line for many things, certainly not things I'm going to eat! Also I looked at the list provided in link cornucopia.org/shopping-gui... and there's no carageenan in Lily of the desert brand.

[Slosh in reply to HeronNS]

Thank you so much.

[SusyTe in reply to HeronNS]

Thanks, HeronS. I read that in order to change the juice into being a gel they had to add carrageenan. Glad to hear that is not the case.

[HeronNS in reply to SusyTe]

I really don't know. I did just go on the Lily of the Desert website and apparently carrageenan *is* used as a thickening agent in at least some of the products. I think I'll check out the organic version next time!

[Suzan62]

I asked a similar question recently re: vitamin C. Obviously that boosts the immune system and I've been taking 500mg time released for years. Wasn't sure if I should still be taking it but people on here seemed to think it was ok.

[Kay_kay]

Hi everyone. Just been looking at suzyte and Dorset lady and wanted to say a big thank you to Dorset lady too as you are always so kind spending time lifting everyone's' spirits. I haven't had time to leave many comments as like suzyte I have a lot of stress and grief at the moment having watched my wonderful dad suffer for 5 endless months before he died and also having the heartache of mum having to go into a dementia care home. I live a long way away so constantly up and down the M6 and trying to care for grandchildren too. I don't want to sound moany at all!- I know some people have far worse but I just wanted to say really that I can sympathise and it seems PMR often starts when a person is going through a hard time (certainly my dr put mine down to that). However I feel lucky as there are worse things by far and it is lovely to hear how things have improved so much for Dorset lady and you have come such a long way from hard times to being off pred now and a nice holiday to look forward to😊. Thank you to everyone for so much valuable advice. I was only diagnosed with PMR in May so not very knowledgable myself yet,sorry!

[SusyTe in reply to Kay_kay]

Sending you BIG virtual hugs, Kay. xx ps if you want a good book with masses of info on PMR try to get a copy of Dr Kate Gilbert's book on PMR and GCA. You can get it on Amazon.