I just needed to vent so please forgive me if this is self indulgent. After a really difficult few months my breathing improved and the gastro problems improved. Today I woke up gasping for air, the dreadful wheeze is back. Within half an hour of being up I was stuck in the loo for hours. Whatever this is it is reluctant to leave me. I am so fed up now 😞
Back to square one: I just needed to vent so please... - LUPUS UK
I hope that things improve during the course of Sunday. Take care. Sincerely Kevin
Sorry you are having such a hard time.
Poor you! It’s just so awful feeling dreadful. Stay warm and turn the telly on xx
Telly on, feet up cwtched under a blanket . Thank you so much xx
Have you watched Last Tango in Halifax? It’s heaven! Xx
Yes I have . I love it so very well acted xxx
It's my joy! Boys and husband watch football...and I watch this. It makes me laugh and cry. Please be good to yourself. This disease is so unpredictable in every system of our bodies. But...we are strong and we know we are not alone. Sending you a virtual hug. Hope you're feeling a bit better this evening. ps...I'd really like to own shares in the pharma that makes immodium!! x
My favourite programme is Grey’s Anatomy. I laugh, sob and feel their joys and sorrows. I have watched every episode of every series twice. Waiting impatiently for the next series now. Meanwhile I binge watched This Is Us. Also brilliant. I have just had another nebuliser so hopefully I will be ok for this evening xxx
No no no..not back to square one Cecily 🤗 a step back yes..but do not lose hope 🤗
These r whacky times...unprecedented!! It's going on n on n it's getting worse!! Stress drives lupus n we're all stressed at the moment for sure.
I'm having a flare too even though I know that I'm safe but I'm missing family..I've got a med regime that seems to be working well..but still I'm flaring 🤷so I'll keep it brief as I can..symptoms returning..r u still on steroids? If so note symptoms recurring at that dose..u might need a bit of a rest/plateau in order to let your body adjust with the reduction.
I could see this coming somehow n that's why I'm keeping an eye on u lady 😜not in a spooky way!!
It's so disappointing when our bodies do this 😔but hey you're not alone 🤗🌈😽😽xx
Thank you Kat. Yes I am still on steroids but reducing by 5 mg daily. I just feel so frustrated. I had hoped this would pass now. You are right of course not entirely back to square one as I now have inhalers and nebules for my nebuliser so I did not need to call the ambulance this time. I really appreciate your kindness and for always stating the truth bless you xx
It may sound daft but have you tried not to reduce the amount of prednisolone by five but a smaller amount instead, ie 2-3. Many people who have been on Prednisone for a long time and at a high level struggle when they get down to a certain level and all sorts of symptoms can come rushing back.
Maybe it's a good idea to stay at a level where you are not being met by the symptoms and then retry the decrease at smaller levels slowly so your body can adjust and learn to cope. But you need to do this very slowly to allow your body to take over from the pred.
I have t been on them long. A month ago I was put on 30 mg fir a week. Four days off them and I had a big asthma attack resulting in blue lights ambulances e and paramedic. The On call GP prescribed 80 mg for five days then reducing by 5 mg. I am now at 25 mg. I will call my GP tomorrow for advice but it is strange that the diarrheoa has returned too and a higher than normal temperature of 99 - 100. To be honest I have most of the symptoms of Long Covid . I only got tested this week and it was negative xx
Maybe the reduction is too quick on the steroids? Just a thought but I know from personal experience how it affects me..in all ways..mind body n spirit!!
U have a good GP..I would try n contact her/him..maybe u can negotiate a bit of a pause for a few days n then start reducing again when you're more stable.
I too am breaking out my warrior weapons to gently wrestle my particular 🐺..we can be sisters in pain if u want..or we can be warriors hobbling along..either way..I'm with ya!! 🤝🌈😽😽Xx
Best wishes and cyber 🤗🤗 to you too KK ,🙏💃🌈x
Have you had other bloods done recently ? So sorry you are going through all this. Sending a big hug. Lou xx
I had bloods done the week before last Lou. My inflammatory markers are up, my calcium has dropped and my liver enzymes are elevated so my GP wants them repeated in three weeks xxx
Glad to hear they are being repeated and keeping an eye on this. Hope you can get some rest and relief, Lou xx
Thanks Lou. I think it was because for the first time in months yesterday I did not have to spend hours in the toilet or feel breathless that I had hope. When I woke this morning wheezing and gasping and was stuck in the loo I just felt so despondent. Xxx
I am so sorry you are struggling so. That is concerning that you are gasping for breath. Do you have asthma? I think maybe you do. You may not be well-controlled. Are you on a steroid inhaler for maintenance? Shortness of breath is a medical emergency. If you don’t have asthma with clear instructions of what to do, you should go to A & E.
Let us know how you are.
Hi Kay, yes I had brittle asthma from my early 20’s until I had been on Hydroxychloroquine for six months when it disappeared. Prior to commencing Hydroxychloroquine I was on three inhalers, low dose steroid and had nebulisers in the home and a portable one in my car. I was admitted about three times a year because it was uncontrolled. I have not had an asthma attack for eleven years until three weeks ago. I feel there is a correlation between my being taken off Hydroxychloroquine last year and this flare up. I have two pumps, am tailing off my steroids from 80 mg and am using my nebuliser. I really had hoped that I was getting better but clearly I need to let my GP know that the symptoms are again returning once the steroids drop. I just feel very fed up xx
You really need to be in touch with your GP. You don’t sound in good control at all and in view of Covid risks, it is so important that your asthma be stable.
Hope things improve. Sounds like you may need a pulmonary consult.
Thank you Kay, I was under a respiratory specialist for for over twenty years then my asthma just disappeared. No one is listening that I feel it was the Hydroxychloroquine hat stopped it.Hopefully when I eventually get to see my new Rheumatologist he can shed some light on it. I have everything I need at home, nebuliser, inhalers, steroids and the hospitals here in the South Wales Valleys are inundated with Covid patients so I am safer at home xxx
Hi CP, it’s so disheartening to have gone from feeling “ok” to “rubbish” again overnight. There is probably no explanation and I’m not surprised that you are feeling fed up. Hopefully symptoms will abate a bit and you will start to pick up again soon. Feeling for you - I’ll post a cheery goodie pic to help perk you up. Sending big hugs 🤗🤗🤗
So sorry to see you've been poorly. How are you feeling now?
Hope the symptoms have eased a little for you. Xxx
Yes thank you. I have had two nebulisers today and taken probably more Imodium than I should. Thank you for asking xxx
Vent away , I’m so sorry you’ve had such a bad time of it lately, so frustrating for you I’m sure - hope you are feeling abit better xx
It’s hard when the good collides with bad again, sorry you’re having tough time cecily, rest up and hopefully tomorrow will be a better day 🙏🙏😘🤗x
So sorry to read this!Very much hoping things get better for you Cecily!
Just a hiccup Cecily and you’ll soon be back on track with your breathing and gastro problems improving again. 🙏🏻🙏🏻 Rest up and take care. Love and hugs 🤗😘x
Hello Cecily, I send you love and prayers. I hope you recover quickly... Lots of love, Lale
Sending you lots of hugs. Hope you’re feeling better today. X😃😃
Can you not start back up on the hydroxychloroquine?
I developed macular oedema when the Rheumatologist upped my dose to 600 mg so they stopped it. I was left with small cysts on the macular. My new Rheumatologist suggested I might try a low dose but only after I get my eyes tested again which has not been possible during the pandemic xx
600mg. I can’t imagine why that dose was given . Maybe your blood was drawn and was found your serum level was not in range with 400mg. I’m that case you have an very astute rheumatologist.
Dr Michelle Pietra ( I’ll double scheck that spelling..) of John’s Hopkins uni in Baltimore Maryland recently published stating the importance of not relying on weight of patient to dose , but to rely on blood serum concentration.
She is a specialist in APS and a lupus.
Sadly he was not astute Kelly. When I had the issues with my eyes instead of apologising he went on the attack. He said that he had met people like me before who were always ill and never anything found wrong with them. He said that St Thomas’s thought they were the Mecca but the diagnosis of Lupus was “ crap”. He said that all that was wrong with me was Fibromyalgia and “ hysteria”.As I was leaving he shouted “ if you get sick you will prove me wrong”. He then tried to discharge me but my GP challenged that. He only saw me that twice. I am not alone in having such a distressing and negative experience with him. Xx
Dr. Michelle Petri
2013. I thought it was a more recent publication.
You are in Scotland?
What a horrible experience and a horrible man, you do not deserve that treatment. Please tell me you don't have to see him again, lupus feeds on stress no wonder you are ill he probably caused it. I felt your pain just reading what you went through, I am so sorry and also angry for you. Rest up and remember Doctors don't know everything! You know your own body, sending a hug
🤗 hope you get better help and feel better soon M xx
Thank you Maddymay thankfully I do not have to see him again. I know I should have made a complaint but I really worried for my sanity after seeing him. I am not alone in this, in my town alone I know personally of three people who have complained, one going to medical negligence and yet someone who saw him recently was every bit as distressed as I was so nothing has changed. I am over him now and moving forward . I have not met my new Rheumatologist but spoke to him on the phone for forty minutes. He acknowledged that life must be very difficult when Rheumatologists could not agree on a diagnosis ( I had SLE, Bechets & Fibro, then Fibro and hysteria, then MCTD, then mild UCTD all in a period of 6 months). It bodes well so when I get to see him in person I really feel he will do his best for me. Thank you for your kindness it is so very much appreciated xxx
Hi CecilyParsley. It’s horrible feeling ill. I don’t have Lupus. But i have R/A, Glaucoma & Iritis. Had the R/A since my 20’s. (In my 40’s now!) I often have awful flare ups. So i know some great ‘recipes’ for cheering myself up.
I put down the feather duster & Mr Sheen. Think sod the housework. Get some soup on. I don’t know what it is. But when i see a big bowl of hot soup & buttered bread infront of me. It just cheers me up. I put it all on a tray. Plump up my pillows. (Ooh er. Sounds rude!) I get into bed. Get my tablet fixed up & i let out a big sigh of contentment.
I flick through Iplayer or All4. They’re showing some great comedies that i never get sick of. The Vicar of Dibley, The Royle Family. Or if i’m in a really silly mood. Miranda.
Comedy is a fantastic tonic. If i’m having an emotional day. Or in alot of pain. It just takes me away from it. (A lovely chunk of chocolate cake & a hot cup of tea!!) Hope you feel better soon.
Hi Vixen that sounds amazing. I love homemade soup. I have batches of minestrone in the freezer so I will make some granary bread with pumpkin seeds and have that tonight. Thanks for the idea. I do hope that you are not in to much pain? As the weather gets colder the joints get like toothache don’t they? Big Cwtches xxx
Thanks CecilyParsley. Hope you’re feeling a bit better?? I spoke to my rheumatologist last week. The arthritis is very tiring. But i’ve been feeling totally exhausted for quite a while. Plus picking up infections easily & my Infliximab infusion hasn’t been working as well as normal. Plus other symptoms. He noticed i have vitamin D deficiency. So he’s put me on a very high vitamin supplement course. I’ve had quite a bad flare up in my left foot. (Agony).
I don’t want to tempt fate. I only took 1 tablet on Monday night. Tuesday (quite alot of stomach pains). But!!!! I think my foot’s improving. Less pain & swelling. Stomach dodgy. But foot less dodgy. The medical world is fantastic & the human body’s very complicated. Let’s hope & pray those poor scientists that must be feeling the pressure to come up with a corona vaccine succeed! VERY SOON. STAY SAFE EVERYONE. (I miss the pub 🍺🍷) x
Hi Vixen I am so pleased that the Vt D is working for you. I have been on it since 2013 , 800IU twice daily. Your tummy gets used to it. I hope your pain continues to improve. Certainly that awful bone ache ( with the exception of my knees which are knackered ) is definitely eased on it. Stay safe xxx
Bloody hell. Cecily. You’re on a longterm high dose of vit D. Glad it’s helping you. I was amazed when i read the symptoms of the deficiency. I had nearly all of them. I put them down to still grieving for my lovely mum. She died 3yrs ago. But i still miss her every day. She was a retired nurse. So kind & patient. My best friend. When i’d had awful flare ups. She was fantastic. Grief is exhausting. Then i read how low vit D can give you a dry mouth, dry eyes, sore joints! I can’t wait to get more of these tablets into my system. Anyway.
STAY WARM & SAFE X
Oh I know that awful gut wrenching grief. I lost my beautiful Mam in 1992. She was 62 and one of the kindest people I have ever met. In my twenties I was left with a Father who left when I was five, an alcoholic with a mean streak and my gorgeous co mer spaniel Crockett. I felt so bereft. The missing never goes away but the grief does ease I promise. I am so sorry. Distress definitely exacerbates our symptoms. I still have dry eyes, dry mouth and painful joints but the deep bone ache has gone. I really hope you get some relief soon. I am always here if you need a chat. Be kind to yourself xxx
Cecily. You’re lovely. You’ve had such an emotional start to your life. What an awful age to lose such a special person. I lost my dad when i was 17. (31 yrs ago now!) He had a massive heart attack. (He was 52). I think i relied too much on my mum. I became clingy, because i was terrified something would happen to her too.
Then when i was 21. I suddenly developed the R/A, Iritis & Glaucoma.
I think people that have had such emotional & physical traumas, can empathise more easily with others.
You sound like a very kind person.
Stay safe! X
Oh bless you what a kind thing to say. I totally understand that clinging. I ad just finished Uni and qualified as a Social Worker when my Mam was given six months to live. I had her home to die and it was the hardest thing I have ever faced. When she became very agitated the hospice nurse came and said she would give her something to calm her but it meant she would not wake up. I was terrified, although she had not spoken, eaten or moved for weeks. Eventually I agreed but was disgusted at myself that my need to hold on to her had taken priority initially. I was so fortunate to have had a wonderful mother. She shielded from the insecurity of the homeless unit we ended up in and the poverty we lived in. I was her world and it gave me such a foundation. Your Dad was so young, t must have been such a trauma for you and your Mum to lose him like that. Life is so hard sometimes. I am sure your Mum would be so proud of the woman you have become. Xxx
Oh Cecily. Your early life has really shaped you as a person. You’ve done so well to not have ended up like your dad. You could have easily let your emotional state lead you down the ‘wrong path’.
Your mum would be so proud of you too!
I’m being kind to myself right now. With a lovely toffee yoghurt & a cup of tea. While i’m watching the Royle family on iplayer. My mum & i loved watching comedies together. We used to really love Auf Weidershen Pet. Used to quote the lines to eachother. I so miss her sense of humour. We made eachother laugh like nutters!!
Such wonderful memories will remain with you always. That is your Mum’s legacy. Such a gift. Enjoy your yoghurt you deserve it 😋xxx
So sorry you are having such a hard time. Have you ever had antibodies for coeliac disease done? It is a simple blood draw. Coeliac can come on the scene in varying ways and often doctors fail to screen for it, because they are looking at other symptoms and diseases and do not think of it. . Don't cut out gluten before the screening or it could give you a false negative. Happy to message with you privately.
Thank you so much. Yes I have had a number of tests over the years for celiacs disease. All negative including last month because my new GP suspected it because of the bloating and diarrheoa.
I am so glad he/she is all over that. I don't know if results are skewed when on immunosuppressants, but your doctor would certainly know that. Best wishes to you for recovery from these problems.
Hope you feel a bit better soon - sending big, big hugs, xxx
It’s absolutely pap isn’t it? I absolutely feel for you. 😔
I have been experiencing similar this weekend. Had raised temp and the headache from hell- with bathroom visits to match. The last time this happened was back in March and I was informed it was a gallbladder attack (along with breathing issues) I too have asthma . 🙆♀️
I am awaiting a GP call at some point from 3 onwards this pm- it will be interesting to hear what he has to say.
As an aside, I actually went for a CV19 test on Saturday - thankfully it was negative ...
Sending get well wishes to you.
Hoping you get some much needed relief, one way or another!
Yes it sucks. I had a negative Covid test too but as it was nine weeks after my first symptoms there as no surprise. I hope your GP is helpful. Bad enough the frequent bathroom trips without the breathing issues so I empathise with you. Good luck xx
Sorry my reply sounded a tad self indulgent. It wasn’t my intention. Apologies for that.
I was wondering if the toilet issues were related to something else ( hence the gallbladder reference)as in digestive problems maybe? I was also told at some point that my asthma was possibly aggravated by silent reflux that can contribute to breathing issues too. Prescribed Omeprazole (😬) but I have to say, for me they work sometimes, not always. Trying to think of solutions -as we do.
Oh my goodness your response did not sound self indulgent whatsoever. If anything my post was. I have had over the years so many tests. They have suspected gallstones, liver issues, celiacs disease, all dismissed with tests. I have a hernia , an enlarged spleen and I get the reflux too and take Omeprazole . All contribute to a bit of breathlessness but this deep wheeze and gasping is definitely asthma. I cannot tell you how gutted I am after 11 years of not having to use nebulisers and worry how far to the nearest hospital hat it seems to be back with a vengeance. I just want them to prescribe the three inhalers that it took the respiratory Consultant years to put together for me and completely changed the way I lived. I cannot for the life of me comprehend their reluctance to do it. It worked for me xx
Oh Lordy me! 🙆♀️You poor thing. It all sounds horrific. And, what an absolute frustration . I can’t believe that’s acceptable treatment at all! A person struggling to breathe-beggars belief.
I sincerely hope that medication heads your way ASAP xx 😔🌺
So sorry to read that things have gone downhill again. Hydroxy seems to keep a lot of things in check. I had a huge flare earlier this year when they tried to take me off it. Really hope you get things sorted. Sending cuddles from a very dreich Scotland. 😘
I really think the Hydroxy did curb my asthma Barbara. My current surgery GP’s have never known me with asthma. They were freaked when they found that I had been in ICU with it yet they are reluctant to prescribe the inhalers that I know work for me. It is frustrating. Cwtches back to you from a dreamy Wales xx
I also get congested in the lungs sometimes. I cough, wheeze, and feel miserable. No asthma. I think it's just the way the lupus flares sometimes. I also think seasonal allergies don't help lupus.
...and of course, because its not typical for many lupus sufferers, the docs just don't understand.
Thinking of you, Cecily. Don't lose hope as things can turn around for the better 🌈💐💐
Sorry your not feeling well, it gets you down when symptoms drag on day after day and you wonder when it's all going to end. The slower you lower the steroids the better only reducing a small dose at a time. whenever I adjust my steroids I always get conjunctivitis I have been on prednisolone for for 34 years. I have herd that prednisolone can cause problems with the liver has this anything to do with your blood results. Hope you start to feel better soon. xxxx
Hi Daniel, honestly I am not sure what is causing what at the moment. You are right it is hard when you get used to a level of being unwell then something else hits you. I was so proud of myself that I was walking a mile on the treadmill daily despite my loose knee caps but in September I developed a severe colic type symptom with gut spasms, back ache, headache and a temp of 102. It just went on for weeks. Then the breathing problems started so I was put on 30 mg prednisolone for a week. It helped but days after I finished the course I started to wheeze badly culminating in the on call GP calling 999. This time I was put on 80 mg prednisolone for five days then I started to reduce my 5 mg a day. Today I am on 20 mg. I have had three nebulisers today plus my reliever and my new preventer which feels that it is not helping at all. I cannot have an asthma review until January. All I need is some help to stabilise the breathing.
Hi although I go as Daniel 55 My name is Jill, Daniel was my dogs name which I am very sad to say died last week he was a lovely gentle Cavalier King Charles Spaniel. Are you sure it is asthma and not a drug reaction causing your breathing problem and if your breathing is that bad they should review it as a matter of urgency not wait for your next asthma review date. If your asthma treatment is not working you are going end up back at the hospital again. when you feel you can't breath there is nothing more frightening you need to pressure your doctors into doing something. I hope you soon find an answer to this so you can start feeling better.xx
Hi Jill, I am so very sorry to hear of the loss of your precious Daniel. I love my cocker spaniels Brodie and Dylan so much so I understand how deeply you loved him. My name is Julia. Cecily Parsley was a rabbit we rescued from living under a car, covered in oil. She was a real character and bossed our two cockers around. She died of flystrike the year before last. I was devastated that she passed in such a dreadful way and blamed myself for a long time. She lived in our house but had the run of the garden too. After a rough night, my breathing is less laboured today thankfully. I am getting my flu jab on Thursday so at least I can appeal to the nurse to change my inhalers. I have my nebuliser which is a Godsend at the moment. It is asthma because I was diagnosed with brittle asthma in my twenties and right up until I had been on Hydroxychloroquine for six months I had regular attacks and admissions to hospital. I hope that you can be kind to yourself Jill. Grieving is so hard when your baseline is being poorly xx
Hi Julia thank you for your kindness to me regarding my loss of Daniel. Toby has been missing him he has been very clingy and looks sad at times but were giving him lots of cuddles. What is the difference between asthma and brittle asthma? I had my flu injection about a month ago. I wish your nights were better sometimes I am slightly wheeze at night but nothing like you let's hope you can get your inhalers changed. Good luck.
Hi there, you are so welcome, I know how devastating it is to lose a dog that you love dearly. When my Crockett passed in 1999 I was bereft. He was with me when my Mam died of cancer, on my first holiday alone, visited my Father in the EMI unit with me. He was my only family member until I met my husband. Some people will never understand the grief you feel. My boys are my babies. When I had an emergency hysterectomy after 8 ears of failed fertility treatment I was quite devastated and depressed. My husband bought me Meg. Astonishingly she had an autoimmune skin condition and diabetes so I had to get out of bed to care for her on my worst days. Bless her she saved me. When she went into total kidney failure at aged 7 , it was so hard to want t get out of bed so we got two puppies. The best thing we ever did. They bring me so much joy and love. Bless him how old is Toby?. Brittle asthma is asthma that is hard to control. I went today for my flu jab, coughing and wheezing. The asthma nurse was giving the injections. I asked for her help in getting nebules for my nebuliser but she refused saying call the doctor this is the flu clinic. I was struggling to breathe and she just brushed me off. I was so angry Tomorrow I will ring and demand to speak to someone as I do not have enough nebules to see me through the weekend. I cannot understand why they se so reluctant to hep me.Sorry I am venting xx
Hi Julia you have to vent to somewhere and we are all here to help one another. I do find my surgery a bit more helpful most of them are helpful. Toby is a 7year old 95% Yorkshire Terrier and 5% Westie loves to play with his toys he has a favourite red ball he takes to bed ever night he likes any toys that squeak Daniel liked teddy bears but he had a green and red sort of soft ball which he used to bring to me when ever I came through the door. When Toby was younger he used to like plastic squeaky fried eggs!! try and have a reasonable night speak to you soon Jill xx
Bless him, he has lost his friend / brother and it must be so strange for him. I am sure with lots of cuddles and tlc he will feel better and reassured. It is funny how they like different things. My Brodie loves balls but has no interest in cuddly toys but Dylan loves his teddy bear it is nearly as big as him and he carries it around and sucks it. When we put it in the washing machine he sits and cries and when it goes on the line he used to try and jump and get it off ( before he went blind). Give To y a huge cuddle from me xx
I'm so sorry your going through such an awful time. Did you have your C Diff checked? I had a high level and I was vomiting and had diarrhea for months until the Doctor found it, I was put on steroids and antibiotics for a couple of weeks before I started feeling better. I hope you feel better soon, take care.
Thank you yes my GP tested stool samples and bloods for most things. The only anomalies were that my calcium levels dropped from very high to very low, my liver enzymes and inflammatory markers were significantly raised. How awful for you to have the vomiting and the diarrhoea. It makes you so weak. I am glad that you are feeling better now xxx
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