Happy New Year everyone. I really hope that you all have as pain free and joyful a year as you can. For me I started the year on my eighth lot of antibiotics and with yet another head cold. Since I was taken off the Hydroxychloroquine in May I seem to have had infection after infection...chest infection, cellulitis, and a bladder infection that just will not clear. In addition the issue with my eyes and lack of clarity persists. Following my second visit to the Macalsr Unit I received a letter from the Opthamologist stating that the “ cysts” on the macular had not grown any larger? This is perplexing as the first letter said there was nothing to see? Meanwhile my GP rang this morning in increasing frustration that when she telephoned the Rheumatology helpline she was advised to start me back on the Hydroxychloroquine and then yesterday received an email stating that I should not take it. She said she totally understands my frustration and feels that Rheumatology are not being consistent or effective. She is concerned about the constant infections and says she requires guidance on how to best treat me. I know the current infection in my bladder remains and my husband has taken yet another sample in today. I am drinking plenty of water, taking cranberry tablets so I am at a loss as to what else I can do.😞
On the Merry go round again: Happy New Year... - LUPUS UK
On the Merry go round again
Hi Lou, thanks for responding. The surgery just rang and a prescription for my ninth course of antibiotics is waiting. I could scream with frustration. Initially I was given five days Nitrofentoin as it usually clears it. Next I was given ten days Trimethoprim. Next Nitrofentoin for 14 days. The lab cultures indicate that they are the two for this bacteria. Not sure what they have prescribed this time. I was on two weeks steroids and three weeks erythromycin antibiotics for a chest infection early last year, then seven days Nitrofentoin for a bladder infection, then two weeks for the cellulitis. Are you feeling any better now? Xxx
You poor love. I had a year like this in 2018 - 8 or 9 courses antibiotics for UTIs and one course for vaginal e-Coli (mortifying?!). Some years are just like this for me and I do think I do better when my immune system is suppressed.
Your GPs are clearly on your side which is a big bonus at least. Mine were hopeless and didn’t even send my pee samples into the lab for culturing. Trimethoprim gave me a really weird Vasculitis rash after 3 courses - I think it can be contraindicated for people with Lupus and Sjögren’s?
I really hope your wretched rheumy department gets its act together for you soon - sounds like the right arm doesn’t know what left arm is up to.
Familiar!🤨🤬🤗
Thank you so much. It is reassuring to know that I am not alone in this but of course would not wish anyone else to go through it. I get the feeling that those of us with autoimmune issues do get tossed around and it is hit and miss if we get to see someone who is interested and joins the dots. Since the latest Rheumy said that there was nothing wrong with me other than hysteria, I recognise that I have just given up. My front crown broke and I went to my dentist who was more interested in why I could not open my jaw wide without wincing and holding the side of my face. He noticed the oozing ulcers under my tongue and asked what is your doctor doing for you. Before I could stop myself the words f*** all came out. He has now referred me to a specialist. I did not even ask who. I am so fed up with myself and veer from frenzied activity to not moving for days. None of this is good but there seems no incentive as no one is a actually achieving anything for me. Miserable bitch alert. I just need a little help this time to pick myself back up. I really appreciate your support. It means the world xx
Don’t even begin to think of yourself as an”miserable bitch” please -,it’s the rheumy who said this appalling “hysteria” thing who is the miserable B - how very dare they???! 🤬
I think it’s entirely understandable that this has made you so depressed so that you’ve given up caring for yourself. I watched a programme the other night involving prisoners and felt so empathising of people who are incarcerated - for whatever reason - but mostly being born into bad circumstances - gangs and poverty - turning to crime to try and protect themselves or family - or just through lack of choice - or to pay for things others of us take for granted. Not an excuse - but just a very tragic reality.
I found myself thinking this is how chronic illness feels - when doctors don’t believe us or care and we are locked into our illness - feeling trapped by symptoms and seeing no way out.
Also someone said the other day on the news about the police not believing them when they said they had been raped or abused - and again I felt a huge surge of empathy rather than sympathy. Why? Because I know how it feels to talk to the hand, to be trapped by lack of earning capacity due in my case to poor health, to feel disbelieved. It’s the absolute pits - nothing worse.
When I feel believed and taking disease modifying treatment I try much harder to look after my body - to give it more of a chance for the drugs to work. When I’m off meds I am more inclined to let myself go and become depressed - It’s weird! I don’t know whether it’s the autoimmune disease becoming more active with no meds or just that I know my body doesn’t process meds well so I need to try extra hard to nourish and protect it.
However I think you need to get some fresh perspective and encouragement from the fact that your GPs clearly do believe you and are concerned on your behalf. As was the dentist. This is real concern about you and the medical neglect and incompetence you and they are up against.
I wish I was up the road and we could meet for a coffee and plot and plan a way round this that would get any doctor who used the word “hysteria” ,or even implied, it struck off!! And, more importantly, how to find you great care. Not one should have to put up with this kind of crap - let alone someone who is so unwell with autoimmune diseases!
So you will just have to imagine us all nearby all meeting and galvanising you to fight back!
I must get back to sleep somehow but I’ve woken in pain with gastritis and a night sweat after celebrating my 57th birthday yesterday by going out to watch Little Women. I’m going through a stage of tearing up - tears that build up due to weather or emotion because of my punctal plugs I think. So husband and I sat in back of cinema eating ice creams and munching Pringles, tears gushing - totally carried away by the beauty of the acting, Alcott’s story, the filming and the location.
Now I’m paying the price!! Also the chemo immunotherapy cream I’ve been using on my lips has put me into a flare up I think. Saw my GP yesterday (birthday present!) and she insists that I stop torturing my lip and the rest of me with it now.
Hopefully it’s done it’s job this time!
But at least I’ve escaped the “hysteria” box (neurology in my case) now and am mostly believed and taken seriously. Mind you I collect my blood test results later this morning so there’s always a chance my bloods have come back entirely normal and then I’ll be heading back in same direction as you. It’s such a fragile state of being for most of us eh?
Hang in there CP we are all in your pocket rooting for you to somehow get back on track and make these doctors feel your “hysteria” right where the sun don’t shine! 😈😈😈🤗🤗🤗Xxxx
Bless you. Happy Birthday for yesterday 🎂🍾🥂. I want to see Little Women too. I loved the book and Little Men too. Honestly you just have to laugh sometimes don’t you? This morning I was in my nightie giving my little blind cocker spaniel a hug when the door bell went. He jumped and butted me right in the nose. My hubby was on the phone and had to drop it as the blood poured out over me my dog the settee. Now I have a swollen nose and the starting of a black eye to go with my broken front crown. Happy New Year eh?? Thank you for your kind words. You are absolutely right we are at the mercy of our blood and the medics who interpret them. I am a fighter but at the moment I need a break to start to pick myself up. I truly hope that your lip heals and that your flare is short lived xx
Oh heck how awful. I have had this happen to me before with my pooches but not nearly as dramatically.
I’m sitting waiting for blood results to finally be printed off for me - apparently still not signed off by a GP so she’s away to look. I have my “fraud” hat on and am trembling a little with worried anticipation of course. I know you’ll relate. Second opinion rheumy apt tomorrow!
Also of possible cheer - PaulUK has just commented on his “FND” saying that David Thuller has written a follow up on his Virology blog a week later:
virology.ws/2020/01/07/tria...
Please take care CP and recover well. My bloods are almost same as my normal only with high blood glucose (😖), CRP of 20 (mine is usually around 12) and slightly lower plasma viscocity which means my ESR would be around 95 as opposed to around 100 as it was. I’m crediting the raise in Levothyroxine for any improvements in mobility and PV/ ESR and lack of discipline over the festive period for my ongoing pre-diabetic state! Also existing low lymphocytes are a little lower. Not sure what that signifies though.
Anyway, apart from a guilt over the latter I think my bloods vindicate my need for continued rheumatology input and this second opinion tomorrow. And for these dodgy inflammatory bloods I give thanks to the Gods as always because I know I’m fortunate to have them. Xxxxx
Good luck to you. Please let me know how you get on. I think my poor nose is delicate. I have smashed it into gravel the first time I broke it and deviated my septum and the second time I broke it I face planted the bidet. Bubble wrap required 😂😂
I did same to my lower ribs and left flank 18 months ago ie landing at break neck speed on the bidet bowl. I’m still paying a price so I’ll share the bubble wrap if that’s okay. And empathy from a woman who’s lip looks like crispy bacon due to immunotherapy cream.
We hysterical types are just one great ball of hysterical fun eh?! Make sure you read the replies on Thuller’s latest blog page - they are SO very us!! Xx
Omg that reminds me of last June when the same littke cocker spaniel pushed between my legs in the bathroom sending me flying backwards, head butting my raised toilet seat and landing with one arm in between the shower and bathroom pole and other arm somehow stuck behind the handbasin. As I am morbidly obese and my upstairs bathroom is very small my hubby and I struggled as to how we could get me off the floor. Inspiration struck and I held onto the bathroom Matt for grim death while he pulled it and me out of the bathroom, along the landing to the top of the stairs where I was able to dangle my legs over and get to my feet. The joys of chronic ill health are endless lol xx
Ah well we are twins then CP. Dogs, obesity, tiny bathrooms with bidets and great tenacity and ability to think outside of the box are big commonalities! I fractured lower rib(s) and have at least 4 large fat necrosis lumps - been told to get them massaged twice daily to untether them. Apparently this injury of 18 months ago is still in early stages according to a nice plastic surgeon. Masseur today says they are looser but still need worth. Hubby says can’t afford masseur again so he’s got to get back on track with causing me to yell out in agony at least once a day!!
Now, as your cyber twin, I’m advising that you to apply same rationale to your hysterical rheumy and find ways to kick their ass without doing yourself any further harm please!! Xx
Thank you for the chuckle, not at your injuries but the sheer idiocy that we find ourselves in at times. I was going to a chiropractor every two weeks and it certainly helped tight muscles, joint mobility and pain but now he is charging £40 for half an hour so I cannot afford it more than once a month. My hubby is getting adept at doing things he would rather not too lol It is a good job I make tasty cakes, great bribes when I need something done xx
Sorry you are going through this, I hope your gp can get the help to help you 🙏🙏
Thank you so much xx
Hi, I am sorry you're having problems. I have a suggestion, as it seems to have helped me. I had had reoccurring UTI's for many years, was eventually put on Nitrofurantoin long term, but only took it for about 5 weeks as it didn't agree with me. I then had a blood test and my liver auto antibodies had gone up to over 1000!!! So was told not to take it anymore. I continued having infections just about every month. The infections had become resistant to almost all the antibiotics, except Fosfomycin and Pivmecillinam, which very few chemists stock. Desperate to do something, I tried just for tummies, an internet firm, run by Linda Booth. She does a "For Women" probiotic (I will try to post a photo) they are not cheap, but since I have been taking them, I have not had an infection since September. I can't say that they are the reason, but it certainly looks that way. Linda is lovely, you can message her and she will give advice. If you do try them, let me know how you get on. Hope this is helpful.
Sorry couldn't send a picture
Thank you so much Pinky. Like you I was put on a long term antibiotic Trimethoprim long term but it simply did not work. Normally a double dose of Macrobid cures me. I drink lots of water and take two triple strength cranberry tablets daily. The year before last I had one UTI all year. Last year was just miserable. I did try something last year that a homeopath recommended to a friend but again it simply did not work and cost a lot. I will definitely check out the site you recommended, thank you xx
I hope it helps. Been reading a lot about the gut, microbiome etc. and Auto immune. This certainly seems to have helped the UTI's. Good luck xx
I have just ordered a months supply. Fingers crossed and thank you xx
🤞x
In hospital again
Query re Rituximab and being licensed treatment for lupus? 
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Help understanding test results please
