I have been on 5 mg Pred since my last Depot 80 mg last August. Was getting worse and worse all the time so Rheumy gave me another 80mg two weeks ago and told me to stop the oral which I did. All was well for only one week, sleeping again, no sweating, energy, feeling normalish, then back to square one, only worse!
My angina returned ,plus coronary artery spasms, this had been hovering since Christmas and all the other ghastly AI things such as sweating, not sleeping, headaches, severe fatigue, sore joints, dire light sensitivity etc.
I had to go back on the oral tablets and am going between 2.5mg and 5 mg alternate days but have not told the Rheumy yet .This helps the heart symptoms a lot but evrything else is still there and I seem to be flaring flaring with the slightest thing, even like a cold breeze as I walk to the garage from the house!!
We are due massive stress soon as three of my four sons are marrying in April, May and June plus my husbands relatives from New Zealand are dueto come to stay for two weeks over the first wedding.
I honestly don't believe this bout of flaring is due to me stressing about it all, at least it wasn't initially but today I am beginning to panic as I feel so totally awful .How can anyone cope when your head is throbbing just because it is a lovely sunny day, I even have the bedroom curtains shut!!I have a metal plate in my neck where I had a previous disc removal and neck fusion three years ago so I do get regular severe headaches anyway but I have become so severely light sensitive in the last month since spring returned.
I have Diazapan and my old GP told me if I needed them to not hesitate to use them, so I took one the last three days but am scared of them as I think I will be needing them all the time at this rate. The diazepan helps the headache a bit but just makes me sleepy and depressed.
I can't take amytriptyline as it upsets the heart problem. And most other drugs are difficult as I also have chronic pancreatitis.
Does anyone know how safe diazepan is for short periods of time? GP said to take three a day when I needed it. Should I take it like that for a whole week up till the first wedding on the 5th of April?
Also my husband wants to put the relatives up in a B &B nearby as he says all those extra people staying here on top of the weddings is too much.
I just feel I am on the edge of a nightmare about to unfold, but appart from husband the rest of the family don't realise how much I struggle as I always try to hide it.
I see my GP tomorrow and the cardiologist on Wed about the returned angina and breathlessness. It all flared ten years ago but at that time they didn't realise it was autoimmune related as I have always been seronegative.The low dose steroids over the last four years have controlled the heart symptoms really well till now.
Just needed a place to voice my fears without worrying the family, my boys fiances are all stressing out about the weddings too!!!! But normal stress, like dresses, shoes, makeup etc! I can't even have my makeup done properly as when I had a trial run a month ago even that caused a flare, as also do facials !!!!
I will get my hair done on the day and slap on my usual stuff, but it better not be sunny or I will have the bright red face, even with sun block!
Life is too hard with this, I tell my husband I want to opt out of life as it is, go to a little island, me and dog, my knitting and total peace and no weddings . He can visit me once a week for an hour or so! Even jail might give me some peace!!!
Sorry for all this ramble but just had to let off steam and set some panic free!
Anyone found the depot injection might be just taking awhile to kick in? And what is your experience of diazapan?
Thanks for listening, it helps even just to write it down.,
C xx
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cuttysark
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Goodness me, what a nightmare! All this stuff to organise and people to meet and greet and worry about, I'd be stressed out too.
I'm sorry - I don't know about the diazepam dosage, so I'm no real help here. I just wanted to say that I understand and that I can't believe that you're not put on mycophenolate (easier on the pancreas than Aza etc), the steroids are obviously not enough all the time.
I relate to the deserted island dream - my husband and I went to the Maldives in January, on a very small island in the middle of turquoise waters. I suggested something similar to him only to be reminded that just few hours before I was asking how far the nearest hospital was by boat...
You made me laugh about your idyllic island paradise and then worrying about a hospital nearby!!! The islands we go to all the time are the Hebrideas and there is a brilliant helicopter service to the big mainland hospitals for emergencies . We had to sue it once when my youngest fell off his bike and literally went head first into a sand dune, splitting off the inner lining of his mouth below his teeth and also getting concussion. They took him away with his Dad while I stayed on the island with the other boys, they operated the next day, and he was sent back by plane the following for the rest of his holiday .Wow, we say a lot about the NHS but that was fantastic!
I feel a wee bit stronger this morning, I took some piriton antihistamine to knock me out and managed to sleep till four then dozed, The night before I was awake from two!
I see the GP this morning at 8.40 so must get out of bed and into clothes, thankfully it is cloudy, I have come to fear the sun so much.
Thanks for getting back to me, we have decided definitely the B&B for my husbands brother and wife, and our niece can stay here, that will be plenty!
Just wanted to add that the Rheumy does intend to switch me to Mycophenolate later after the weddings are over. He didn't want to rock the boat just now as I have a bad track record in tolerating new drugs. I had awful biliary pain with the Hydroxichloroquine and managed only three days before having to stop.
I so hope I am Ok with the Mycophenolate as it sounds a much better drug for me, and my biliary doctor agrees too.
Have discovered this morning that I also have new biliary infection so at least I have found another reason for feeling so miserable, am hopeful now!!! C xx
Myco is very good for my gallbladder, it reduces inflammation and the Gamma GT that is usually elevated because of it, reduces with myco. I'm glad you will be trying it - let me know once you do, how you get on!
It is gorgeous - so good for the soul. Makes one not want to come back. The sun is blistering, though and it can be so very hot. I was saying to my husband - we could find a shack on a small island to live in. As long as there is air conditioning and Internet, i'd be happy. Forget about medications,hospital appointments, A&E - leave life take its course. He didn't believe me. He was right, everything sounds perfect while away from responsibility. The moment you establish your life somewhere you starting wanting more :).
Sorry to hear you're having such a bad time Cuttysark. Try 120mls of depo-medrone next time (the maximum dose), which should keep you comfortable for longer. You can have 4 of those per annum, ie. one every 3 months. Obviously 80mls is not enough. Do not supplement 120ml injections with oral steroids though! Hope that helps!
That is good to know Tigerlily, funnily enough the Rheumy was wondering about giving me 120mg this time but wanted to give me a booster 80mg in May before the last of the weddings.
I am going to see him in a months time so can talk it over with him.
So sorry you are having such a nightmare with your health at such a stressful time with three consecutive weddings!. Congratulations for those but a pity they have been planned close together!. Thank goodness you have an understanding husband and I hope the relatives will stay in a B&b.
I can't help with diazepam dose but am interested in your angina symptoms because I have the same and find I need a higher dose of steroids to improve it than you are taking. I'm going thru a flare of it at the moment and have had the steroids increased to 25 mg for 2-3 days and it's stopped the pain. I don't have those injections and I just wonder whether your Rheumy should be looking at your overall treatment rather than relying on injections?. They can be so cruel, giving you benefit and then snatching it away so fast!. I'm glad you see a cardiologist and it's good you have the appointment this week. I'd be interested what he says as I don't see one regularly and have had these symptoms now for 4 years. It might also be worth seeing your Rheumy early but see what your cardiologist says first. You have been so helpful to me that I hope I've helped you if only in a tiny way?. Take CareX
Thank you Misty you have indeed helped by sharing your own experiences too.
I am just back from GP and she has told me just to continue the oral steroid just now and not reduce and take diazepan if I need on the days up to the wedding.
But, it was quite interesting, she also thinks I have my biliary infection back as well which could be why I am feeling so unable to cope. I have been sweating , drenching sweats day and night and today bile duct is aching and I am feeling sick. I have been started on large dose of Ciprofloxacin which usually works pretty fast if it is that. Sometimes you feel rotten and don't realise what is wrong till it is staring you in the face!
It will be interesting also to find out what the cardiologist says on Wed. I had coronary artery spasms and what they called microvascular angina about ten years ago but no one realised it could be autoimmune but lo and behold when I went on permanent low dose steroids it sorted itself out.I just take atenolol for arrhythmia.
But recently, back with a vengeance, every time I walk the dog I have to use nitrate patches to stop the angina.Am so out of breath all the time especially lying flat in bed and now have a new sharp pain in my chest that is definitely not indigestion and is relieved by sitting up.
Will let you know how I get on at cardiologist, but to be honest I am not that hopeful he will know much about autoimmune type things !!!!
Nice of you to be thinking about me. Beleive it or not I have had the most awful biliary infection all week with terrible pain like a five inch knife under my right ribs. I had a week of Ciprofloxacin antibiotic but nothing was shifting it. Because of my heart problems and return of the angina I had been supplementing 2.5 mg oral prednisalone on top of my Depo Medrol injection from five weeks ago. This had helped my heart but I had the feeling the oral Pred tablets were irritating the bile duct every time I took them so I was up a blind alley and feeling the treatment was actually making it worse.
Well, after a lot of thought I decided to stop the oral Pred and change to the hydrocortisone and thank goodness the bile duct seems to be settling at last.I still have some effect from the last Depot Medrol injection too so it was safe to stop the Pred.
Our wedding is on Easter Sunday and I felt so unwell last week I could not face going to see the cardiologist so I postponed him until Wednesday next week.
I also see the gastro Professor again on Tuesday. There was no point in even phoning the GP as they know nothing and less than useless. I just need to work it out myself or phone the Prof, I have his home phone number if I am desperate!
We are staying overnight at the wedding so I will be able to go for some little rests if I need.
I am organised with everything now, including the dog sitting and just lying low and resting till the big day. My husbands three New Zealand relatives are staying nearby with a cousin as they realised I was so unwell and have been so understanding about not staying with us.
So fingers crossed all will go well!!! It is like a military excercise organising your life when you have am illness like this isn't it!
Thanks again for you thoughts and hope you are having an improvement yourself from your iron .
Good luck tomorrow for the first wedding, be proud Mum. Good luck next week for your appointments, will think of you. We have to be our own health detectives in the end, thank goodness you solved that nasty pain!. I am feeling better for the iron, has helped solve chest symptoms. Got sudden colitis bout that I'm treating!. If you go onto Mycophenolate I can help you with it as took it successfully for years. Take CareX
Thanks Misty, will be interested in when they want to start the Mycophenolate and will certainly be looking for any advice, as I don't have a good track record in tolerating pills!
Today am chilling in bed,gathering strength for wedding tomorrow! Sun is shining for a change and that freezing east wind has gone at last!
Mycophenolate has been found to be well tolerated by Lupies as it's side effects are minimal. Probably why it's been recommended for you!. Enjoy Sunday, weather is perfect.X
Oh Cuttysark it's like reading about myself just over a year ago. my son got married last Feb and we had 6 extra people in the house 4 not speaking English but 2 were doctors well versed in Lupus (brought extras with them that I dare not take :/ ) Anyway, my son and daughter took charge, all the visitors knew to expect nothing from me and my GP put me on 40mg of Prednisone from the week before they arrived until the week after they left then of course I had to wean myself off but I wouldn't have got through without them. I think I had an injection too but couldn't swear to it The wedding went without a hitch and the visitors cooked most of the meals. It's a daunting prospect you are facing but you just have to be honest with everyone about your limitations. Good luck and enjoy your weddings
Oh thanks so much Margaret, when I hear what you went through too!
You were on way more steroids than me, my GP is totally paranoid about steroids,makes me feel I am on heroine or something!!!!
I am still with the awful practice as I have not been able to change yet , but at least she gave me more prednisalone today and was relatively pleasant.
I think she realised she was way over the line last time.
She did say though "Do you think it could be psychological, you think the steroids help so they do" This is because she does not believe in seronegativity so basically all of us with negative bloods are up a gum tree making it all up.
All this despite many letters from the two Professors in Glasgow explaining it to her,However that is not a battle for today and one thing at a time, I am now sure I will feel more like myself when the antibiotics kick in.
So glad your wedding went well and everyone mucking in to help. I will just have to be brutally honest and keep to my bed when I need.
Hope you are having a better spell yourself just now, C xx
Hi Cuttysark both my GP and Rheumy say to me that sometimes you just have to accept that you need steroids. I do take Alendronic acid and Calcichew for bone protection though.
Sorry to hear you're suffering so much. I am in a similar position at the moment, although it's our own wedding we're planning. I've just had the 120mg injection, which worked fantastically for a couple of weeks, but now I'm starting to feel awful again. My pleuritic pain has never gone, and I feel like I've got an elephant on my chest when I breathe at the moment. Gotta love this illness! I've started on methotrexate, so hopefully that'll start to help soon. As far as diazepam goes, just be careful. I'm prescribed clonazepam which is similar, but they are both very strongly habit forming. The last thing you want to find is that the thing that helps in the short term makes it harder long term. That said, if you take it only when absolutely necessary (mine is for shocking muscle spasms), it really does help. Good luck and hope you manage to feel well enough to enjoy the weddings x
Appreciate your reply Diamond, it is so uplifting to hear how others are struggling through this battle as well! Was interesting that your injection did not last long at all.
I actually took an antihistamine last night to help me sleep which gave me six hours which really helped. I am really scared of diazapan and only use it for emergencies.
I have been on morphine for ten years off and on and it is no bother, I can get off it no problem but those diazepan types you have to be so careful of I so agree.I take the morphine as I have a neck disc fusion and erosion of the other neck discs.
I so hope you feel a lot better before your own wedding, is it far away yet?
All being well the methotrexate will have kicked in and you will have much more relief.
Thank you for your reply. It's nice to know you're not on your own! I took morphine for quite a while, now I take oxycodone as it's stronger so you can get more relief with fewer side effects. The worst thing I've ever had to withdraw from was pregabalin and I would never, ever advise anyone to take that! Even though I've never had problems with clonazepam, I know people who have, but I think as long as you're careful it'll be fine. Sometimes you just need the relief. Lack of sleep makes everything so much worse! We get married in August, so I'm hoping that will give me enough time to get back on my feet before then. I can't believe you have so many weddings in such quick succession! You must be excited, overwhelmed and shattered all at once! Take care of yourself and get some rest when you get the chance xx
Glad to hear you have till August to let the meds work and feel stronger.
I did take pregabalin myself for only two days as it made my heart race non stop! From what I hear of it maybe was just as well I was not able to tolerate it!
Just think what the brides' parents are going - at least you have 4 sons. I'm sure all will be well on their wedding days. Just try to calm down. Good luck.
Thanks for your message. Yes, if I had daughters I guess the stress levels would be mightily more by now and I would be feeling it even worse. It just would have helped if they had spread it out more. They all got engaged around Christmas 2013 but couldn't fit in weddings last year as other family and friends were busy marrying then , and venues have to be booked well in advance.
All the weddings are quite small affairs thankfully, I am sure I will love it all on the day .At least I have about two weeks to go for the meds to kick in.
I think once I am sleeping better too I will cope better.
I am sorry you have so many serious health problems, must be overwhelming at times!. I'm pleased your GP was so good and you can stay on the oral steroids!. Fingers crossed you feel better from the antibiotics, steroids can mask infections.
Good luck for the cardiologist, my Rheumy doesn't acknowledge it's an auto-immune problem despite steroids working, thinks it's more a pain problem!. It's great to find someone like you going thru same problem, luckily there aren't that many of us!.
I finally get blood results today, B12 and folate and anaemia. Hope to get help. Take CareX
I do hope your blood results come up with something definite that can be rectified. My B12. and Vit D have been low in the past. But all other blood tests normal. With me it is the Rheumatologist who is declaring it all autoimmune while my Gp's say they don't believe him, yet he is a Professor and one of the best around here.
I was really surprised my GP woman agreed to let me keep on the oral steroids, think it is just with those weddings coming up she doesn't want to rock the boat!
To be honest I sometimes find it quite scarey when I try to explain it to them remembering what the Rheumy has told me, I quickly realise they have no clue as to what I am talking about!! I think they believe only in ticking boxes and positive blood tests. I was spoiled for over 12 years with the best Gp around, saw him almost every three weeks and went out of his surgery each time feeling optimistic and happy and in control.
Chatting to you all here when I have felt overwhelmed has been a real God send.
Thanks so much for your own input Misty.Will let you know how the cardiologist goes . Good luck in your own journey too! C xx
My bloods have produced a mystery as the type of anaemia I have should automatically produce B12 deficiency and mine was normal!. They don't know why this is happening. I've started on iron and hope to feel a lot better. I love this site as it makes the abnormal normal and it's so helpful chatting to people like you going thru the same things!. Are you like me with antibody tests and inflammation tests coming back normal?. I hope you are starting to feel better. You must be able to be proud Mum at these weddings!. You must miss that wonderful GP, it's very tough when we lose understanding medics. I miss a couple of gpod Rheumy's I had, often wonder how they'd treat me now!. Good luck for the cardiologist today. Take CareX
Got a phonecall to say cardiologist had to postpone to a clinic next Wednesday at 11.
Bit disappointed but gives me more time to work out what to explain to him! It is so difficult when so many of our symptoms overlap but the heart ones have always been quite distinctive and I did see him years ago with it all.
He is a nice man, not dismissive nor scarey but you always feel it is like going to a job interview or worse!!!
So much depends on you getting over the facts in the wee while you have sitting there, though I do write out bullet points for myself in case the old brain goes blank.
That's tough about your appointment being postponed till Weds but as you say it gives you more preparation time!. I so agree with you that these appointments are like job interviews and we don't have long to make the right impression. It doesn't seem to get easier the more we do either. I am feeling better with the iron, no chest pain either which could have been caused by the anaemia this time!. Hope the antibiotics have helped you and I look forward to hearing how Weds goes. Best of luck, you'll be great.X
That's nick name sorry your in pain read . My profile wgat I have long list autoaumine illness lupus Fibromyalgia Hughes syndrome rheumatoid arthritis and sjogrens syndrome plus lupus painculitis rarer one and disciod my email address is ritawakley@hotmail.com
Drop me message if you like as I can't always log on x
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The wedding went without a hitch and the visitors cooked most of the meals. It's a daunting prospect you are facing but you just have to be honest with everyone about your limitations. Good luck and enjoy your weddings 
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