Morning all,i had a really bad day yesterday thanks to the pneumonia i am no where near to being well from it. Anyway the reason for my post was seeing the rheumy nurse and everyone wondered why i was there as i looked so ill and i felt it to be honest. Anyway rheumy appt. she was not going to give me the injections while i am this ill. We did talk about changing the MTX as i have been off it a lot due to chest infections.I suggested it as i felt it was about time for a change. She will be thinking about it until i go to see her in three weeks time. Someone on here mentioned latent TB and i mentioned it to her and she said you were tested for it before you were given Cimizia so that one was sorted. I couldn't take that for long because of chest infections. SO that is how it has been left until i go back in three weeks time.
By the time i got the chest x-ray done and got home i was so exhausted and felt so ill,so i got undressed and went to bed. I stayed there and by the end of the day i felt brighter. This pneumonia is going to take its time to go and i think if i am better from it by Christmas i am going to be lucky. Nurse did mention i might have to go and get my breathing tested to see how it is. So thats where i am now and i will continue to recover from this pneumonia and keep resting and not doing anything, yes i know you have all heard that before as you know me so well,but i can promise this is one lesson i am going to learn as i don't want to feel this ill again.xxxxxx
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sylvi
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Darling i know you were darling. Thanks for the hug,i feel brighter this morning,what i will like as the day goes on is another story,i am still quite ill sadly.xxxx
In one of your previous posts you mentioned that the doctor had put COPD on your notes? Have you discussed this with your GP as COPD does need proper management, and maybe it could help you not get so many chest infections if things were managed a bit more ?
Yes , I wanted to mention the COPD. My husband had that and was prescribed the appropriate medication . It was an enormous help and made such a difference. Please look into it as helixhelix suggested.
I agree with HH.......you should mention it now Sylvi....after all the Pneumonia is affecting your lungs & if you do unfortunately have COPD you will need special treatment & get advice from a pulmonary specialist ASAP.
Pneumonia must not be taken lightly and as you have had to stop your MTX you really do need a specialist doctor to advise & treat you, so that the conditions you have don't run away & you end up in hospital for Christmas!
I know...I'm a right little ray of sunshine aren't I? But that happened to my friend last Christmad & she was in hospital for weeks.
So don't go out to your GP......ask for a house call.....cold damp air is your enemy right now....you need to stay in the warm !
I don't know what type of meds you now take? but due to recurring urinary tract infections, which have led to sepsis on two occasions, my rheumy eventually had to stop me taking all types of immune suppressing meds, including steroids. The only specialised RA med I can take is hydroxy. Since stopping all RA meds I have only had one symptomatic UTI in over a year and that was instigated by having bladder surgery. I would have had at least two UTIs during that period when taking immune suppressors. Obviously life is more difficult without proper medication and can be a heck of a struggle on times, plus having uncontrolled inflammation has its own risks.. That said, I would still rather put up with those things than run a higher risk of getting a serious infection again. Also, I have RA related lung damage and my chest consultant advised me to stop taking MTX as it can cause its own lung issues....I didn't need to be told twice!
Maybe you've already discussed medication issues with your rheumy? If not, and going by my own experiences, then it might be a good idea to do so.
I hear you. I got double pneumonia two years ago and I stopped methotrexate and lefluonemide for a year after to allow my body to recover. I became very sore and stiff but never re started the lefluonemide.
I take methotrexate weekly plus sulfasalazine and a course of prednisolone here and there.
I struggle with pain and increasing ESR but it's my body my decision. And if it turns out to be wrong so be it.
I tried three different biologics and the last one upset my heart. The one before gave me leg ulcers.
I am having carpal tunnel surgery in 2 weeks so have stopped the methotrexate, which of course leads to more pain, fatigue etc.
Sorry to hear about your problems. That double pneumonia doesn't sound too clever, I bet you were relieved to get over that...scary times when we get these serious infections isn't it! I well remember how worried I was when I had sepsis, especially the first time when I had septic arthritis in my hip. They even scanned my heart as they thought the bug may reached there.
Decisions decisions...I've had to make a few since I've been ill, and some weren't at all easy to make. Was it your decision alone to stop the MTX and lefluomide, or did your rheumy also think it the wisest thing do do?
I discussed it with my Rheumatologist after I came out of hospital. I see him every three months and have done for over ten years now. I see him privately.
The hospital had sent him a report and all the blood tests and he was horrified .
He said my immune system had completely crashed.
I said to him that I thought it would be a good idea to stop for a while to let my body recover and he thought that was a good decision. I kept the sulfasalazine going and I slowly recovered. I decided in my head 12 months and by the time I went back after 12 months I was in so much pain, stiffness and climbing ESR I asked him to start me up again.
It's like between a rock and a hard place. So now I take the methotrexate and sulfasalazine only plus Tramadol and lyrics (pregabalin)
I was very very sick and they put me on a breathing machine then after two days just oxygen and of course IV injections.
Every year I have my influenza vaccination so I was mightily surprised and when I recovered I said they should give me a refund. Lol.
But with immune suppression we are vulnerable like the elderly people and I just caught a strain of it that I wasn't covered for.
I don't know if my decision is the right one, ultimately time will tell and I am not encouraging anybody else. Just sharing my story.
It's good that your rheumatologist listens to what you have to say and you can come to a joint decision, and one that seems to have helped you recover somewhat. My rheumatologist also takes my thoughts and concerns into account when we discuss what course of action to take, which has happened more times than I care for. I've had RA for approx 14 years and have been with my current rheumatologist for about 5 years...I really like her.
Between a rock and a hard place pretty much sums things up for me too. Following the septic arthritis episode my rheumatologist was very careful as to what medication to try. We gave MTX a go, but after a few months I got diagnosed with a RA related lung problem so was advised by my chest consultant to stop the MTX. It was starting to work ok too! Because of that, combined with infection risk, we were down to just a couple of RA meds left to try. She thought that azathoprine was the best bet, but before I could try it I was once again hospitalised with sepsis, this time following bladder surgery. So that was that as far as immune suppressing meds go.
For the past year or so I have been on hydroxy, tramadol and paracetomol. My RA is not as well controlled as when I was on proper meds but I am getting by, and most importantly, have not had a serious infection since the sepsis. Life is more uncomfortable since stopping immune suppressing meds and my mobility is far more compromised, but I would much prefer to put up with that than run a higher risk of getting another serious infection.
I hope things work out for you, Lesley, and good luck with the carpal tunnel op.
I take Aloe Vera juice and bee pollen which helped me when i had surgery on my back and to be honest i was shocked by how quickly i recovered,i had no infection in the scar and it healed briiantly. I can only put it down to what i was taking as i have never recovered from surgery so well before.
You really are suffering aren't you darling. Hugs.xxx
I have been taking the end product of bee pollen for the last 9 months in the form of manuka honey, which is said to help prevent UTIs. Difficult to say if it's having a positive effect as I also stopped all immune suppressing meds (as mentioned above) a few months previous. I'm pretty sure the latter is the main reason, but as I haven't had a UTI for over a year, and would previously have had at least 2 during that time period, I certainly ain't stopping my manuka!
Yes, I don't seem to have had much luck, and the past two and a half years years have not been much fun. There are a couple of positives though... my chest consultant seems quite happy regarding my lung condition, and said that if there's no further deterioration by next May then he doesn't want to see me again...all digits crossed on that one!! Also, I remain infection free following my last bladder surgery, which took place 10 days ago, to remove a few small stones. So I do my best to keep my chin up, well what else can we do!............
Thank you for your reply. I feel that we have similar thinking. I tolerate the methotrexate well and Tramadol and lyrics so I limp along you know.
I know this disease is winning. And I have numerous other RA related issues now.
Cataracts diagnosed last year. Sjogrens disease, adrenal Exhaustion, underactive thyroid, depression, and heart problems.
My heart seems to be ok but I get frequent Angina. I am on heart medications and have the patches and spray when required.
I read a study recently that said that scientists were trying to decide which came first as research showed a very high proportion of RA patients having heart problems.
They seemed to be suggesting that heart problems were related somehow.
I don't know if it's because of elevated CRP and inflammation which damages everything. Anyway it's very interesting to hear that .
Sometimes I feel like I must sound like a hypochondriacbut I know I'm not. I guess I'm just super sensitive that acquaintances will think that. It is an invisible illness
Blimey, you've got a bigger list than me there Lesley!...I feel for you, and yep, I am familiar with that hypochondriac feeling!
I also had a mild heart attack not long after getting RA 14 years ago. An angiogram couldn't detect any problem and the cardiologist reckoned my RA was inactive at the time so not to blame. I have my suspicions that anti-inflammatories had a lot to do with it.
A couple more less serious health conditions I have are...quite bad rosacea, plus stomach problems due to various meds affecting my gut. My biggest concern however is my increasing antibiotic resistance...the bug I usually get has become resistant to all the common antibiotics that a GP can prescribe. So you can see why I'm so concerned at avoiding infections even if it does mean having a painful life. I've heard various medical experts come on the radio to warn, quite rightly, about increasing antibiotic resistance and the big problems it will cause in 10 or 15 years time if nothing is done about it. That may very well be the case with relatively healthy people, but it certainly ain't the case with someone like me who has a compromised immune system and recurring infection risks...it's happening now!
I needed to get that little lot off my chest, but best stop ranting now as I'm beginning to sound like a crazy hypochondriac!.....
Oh no, you are not. But as I said I feel maybe I sound like that.
My Rheumatologist put me on probiotics. He said that the Rheumatoid affects the way the gut absorbs nutrients. That's why he recommended so many vitamins.
The cardiologist said he thought I had coronaryspasms. Hence the heart medications and aspirin.
You are not ranting, I am here to empathise and hear what you feel.
Thanks Lesley, I know we are not hypochondriacs too, but like you I occasionally feel like I sound like one.
You are not the first person who's suggested trying probiotics. Is the stuff you have prescribed by your rheumatologist or available over the counter?
I've been on asprin since the heart attack, but have recently tried without it due to my stomach problems, and it does seem to have helped. I recently had a tablet review with my GP who wasn't very happy when I told him I'd stopped asprin. He's now trying me with a coated stomach gastro resistant asprin. Early days, but it doesn't seem to be working. I tried clopidogrel but that didn't work either.
The Rheumatologist told me Inner Health probiotics which have to be refrigerated. But I shop online a lot because it's easy and everything is deliveredto my door.
I found Swansons probiotics I think it's 16 strain which he said is much better than he suggested. I am also taking Korean gingsengwhich he said was also really good.
I have enteric coated sulfasalazine.
For my heart I have baby aspirin and top strength of Cardizem. 360mg.
Plus introducing patches and spray.
I have a history of stomach ulcers and can't take anti inflammatories at all.
Even a short course of rednisolone makes my tummy a bit off.
He also said to try to have pot set yoghurt.
Here the brand is Mundella?
It's not the everydayfruit yoghurtsin multipacks,
You want pot set natural yoghurt.
It seems like we are all saying very similar things, so instead of feeling like we are difficult patients we are all hopefully realising how many facets of the disease there are.
Probiotics and natural yogurt just added to this week's shopping list. "Dr Langers 16 strain" seems reasonably priced and looks as good as anything advertised on Amazon, so I think I'll go with that. Thanks for the info.
Sorry to hear that your stomach is so bad. I've had to stop taking anti-inflammatories too, but can treat myself to the occasional naproxen when I'm having a bad RA flare. I try not to take more than one a fortnight though, or trouble looms.
It's been good talking to you too. The best of luck to the both of us - I think we could do with it and a bit more!!
Sylvia you really are having a bad do. At least they have seen how bad you are and may try something new to give you more help. Let’s hope they can get you sorted for Christmas at the very least. Thinking of you.
Sylvi, now is the time to read all those books put on one side and watch the DVDs that cheer you up. I was in bed three months summer of 2015 and you do get crazy wanting to be out but picking up more germs would be awful. Think to yourself you are definitely going to feel better by Christmas and we are all sending positive vibes and lots of gentle hugs. xxxx
I bet you don’t want another year like this one! I hope you are feeling better in time for your next Rheumatoid appointment. I had a second steroid injection in my ankle on Monday. Today it is worse than it was last week, so I too am having to rest - not something I find at all easy to do, so you have my sympathy.
Aww bless you Helen it is no fun is it darling,i find resting difficult because it has never been in my make up. When i was a mobile caterer i was always in demand as i was a good worker(got to boast about something don't i) so this resting lark is hard for me.
Thank you all for your support over these last few weeks during this illness. Love you all very much because you all understand how i am feeling.xxxxx
I know exactly how you feel - I worked for more than 30 years as a primary teacher and a mother of three children. There wasn’t any time to relax. I know, there were all those long holidays, but they aren’t all that long when, as a conscientious teacher, you take all the preparation into account. I even took my laptop on holiday! When I was at home in the holidays I felt guilty sitting down during the day so did lots of diy. I was diagnosed with RA in 2004 but have had lots of joint pain for many years so just got on with it. It was only when I’d been diagnosed with asthma and bronchiecstasis for three years that I finally decided I could no longer work. That was really depressing, but since my husband retired things have got better. Until our caravan was stolen in July things were looking great. However we are going to the caravan show next week to hopefully buy a new one!
Some b"""""ds will steal anything won't they. I think it was 2004 when i got diagnosed. I had pneumonia 15yrs ago and the following year i came down with RA. I haven't worked since 2009 in the November when i got made redundant. I have just been up the village on my scooter to get the milk and it has wiped me out. I took my camera,but didn't take any photos so that tells you how bad i feel.xxxx
I retired in 2015, a year earlier than I planned, and because I don’t get my state pension until I’m 66 we are dipping into savings to buy a new caravan, but my oh realistic es it is something I need mentally. I need to go shopping this morning then I’m set to talk to new students at my Drs surgery this afternoon. That is something I really enjoy doing. I love seeing your photos. Mine are usually of our mad dog!
I feel so despondent now as some salt/pepper mills i brought that should make it easier for to use i can't get working,it seems everything i damn well touch goes wrong. wonder why i bother i really do.xxx
It’s not in my nature to give up, nor yours I expect. My oh has taken the dog for a walk so I thought I’d be helpful and prepare the chilli for the slow cooker. It must have been a funny site because I was standing on one leg to do it because of my ankle. As it happens I wasn’t very helpful because we’d run out of frozen onions (now on shopping list) and I can’t cut fresh ones, and we’d run out of chilli beans so all I’ve done is brown the mince! I have a jar opening device that my mum bought me. You need to have strong hands to actually attach it to the jar - it’s defeats the object if someone has to attach it to the jar before you can open it.
I| don't cook anymore as i am not safe in the kitchen anymore. I do try now and again,but potatoes are out of my scope now as my knuckles are so swollen. I think with having had this pneumonia and the slow recovery is why i am so despondent as your right it is not in my nature to give up,but this morning i might make an exception and go and have a good howl,because i want to be well and i am not.xxxxx
Oh Sylvi, I feel for you. I only do slow cooker cooking, usually on a Friday - I make a mean chilli, but use frozen onions and peppers, and have tins opened for me. I never did enjoy cooking so for me it’s not too bad. A good cry is often a good thing.
I used to love to cook a meal,especially a good Sunday roast. I had a really good howl. all i did yesterday was go up the village to get the milk i didn't even take any photos i just went up and came home and i ended up on the bed and thats where i stayed. I haven't slept very well either so i can see a rough day ahead. Never mind i can do my colouring in all day long.xxxxxx
I know it’s sometimes frustrating not to be able to do what we want, but our bodies usuallyknow what’s best so it’s good to listen to them. How do you manage with colouring and your hands?I love colouring, always have, but I have to use fat crayons and can’t do it for very long. My relaxation is alternating crochet and cross stitch.
I have chunkyhooks - the hooks themselves are thin but they have chunkygrips. I’m makinga throw out of hexagons - at one hexagon a day it’s a long term project. Glitter pens sound good.
Me too. I used to cook but now I take my wheelchair into the kitchen and I sit down to do it. Yesterday my hands were so sore I chucked the steaks in the slow cooker to make curry 2 kg of meat and left it to cook. This morning I broke up all the meat when it was tender. I have got nearly every gadget. I make three sultana loaf cake mixes at once and when cool I cut and put in plastic storage container in freezer .
I had double pneumonia two years ago and was in intensive care. I never want to be so sick again either. I never thought I would get that and it gave me a nasty fright.
Lesley this has been bad enough and i don't know how ill you were,pretty ill to in icu i am so sure of that. I know i don't want to be this ill again either,the last time i was nearly as bad as this was 15yrs ago and the next year i got RA. I am dreading what will befall me next. Though the pneumonia has gone the aftermath is shattering,not to be able to do anything because your beyond tired and fatigue and you just can't do anything is sooooo very hard for me as i love to garden. I am on the mend though thank heavens.xxx
So glad to hear. When I first got Rheumatoid Arthritis nearly 30 years ago, he said not to worry, it wasn't like the olden days, it could be managed. It's not so easy any more, in my 30's and 40's I could drive through it , I had four kids and a husband and I did it. With an occasional afternoon nap.
Now at 59, it rules me. I am more and more having to plan activities to no more than once a week ideally. I get exhausted so easily and yesterday my son came up to help me as our door lock had broken and I couldn't get into my bedroom for medications or to lay down. This morning I can barely move, way too much standing yesterday.
We had a lovely day friday it was warm and sunny 29 degrees Celsius so I rode my wheelchair to the closest big shopping centre 4 kms away. Had lunch and coffee, bought a few things from supermarket.
The next day the weather turned, raining, icy cold gusts of wind overnight, the next day I was in bed and for three days as it got colder and more rain I stayed there, it's the warmest most comfortable place to be. I sleep on a medical sheepskin under a wool doona and my little Chihuahas sleep with me and keep me company.
I am unable to fight it anymore, just have to accept which is hard to do. When my body says bed that's what I do,
Anyway this site is awesome, I haven't found anything like this here, and I really appreciate sharing this journey with all of you ladies who know exactly what I am talking about
We have spent a lot of money on things to make my life easier,eg; electric bed(we have two now) The second one is two beds in one as we both have different needs. The first one was brilliant and we put it in the other bedroom. Rise and recline chairs so i can lay down if i am down here during the night. I also have chunky cutlery and a mug with two handles.
Lesley darling you have had a lot of suffering and ordeals and i am glad you are here as it makes the mix better. We are a brilliant
group and at times we don't take ourselves seriously as we have a laugh despite whats wrong with us.xxxx
Thanks Sylvi, yes it is true you need deep pockets with Rheumatoid Arthritis. I am fortunate I get a bit of help from the hospital. I waited 3 years for funding for my big Glide power wheelchair which apparently cost $15,000 Australian dollars and I just recently got a new lift recline chair, my other one wore out.
This group are the only other sufferers I know and I find it very helpful.
I just don't want to come across as super negative, I don't think I am very negative but I do have bad days .
We all do Lesley and i am feeling very down today as this pneumonia after effects are taking its time to go. I have no fight in me i am that tired and fatigued I could cry this morning as i feel so out of sorts.xxxx
Dear Sylvi, I know it's very hard and you're beaten up and exhausted right now, I have been there.
'But this too will pass'
Try to accept where you are today and be kind to yourself. You didn't choose to be sick, this happened TO you either because of genetics or bad luck.
We have never met but I send lots of love from Australia and hope you are feeling much better soon.
When I am feeling down I try to remember to use an oil burner. Candle under bowl and put a drop of lavender in warm water. Eucalyptus also helps with breathing . Then I put a meditation cd on and get my heat pack and get in bed and stay there.
I have an Homedics air purifier cleaner on my bedside cabinet to keep dust down and have had very little asthma since I did that.
There is something over here called Floradix, it's a bottle of iron and liquid vitamins for convalescing and pick up. I have always been anaemic so I get a bottle every few months.
Ensure milk protein powder daily available from chemist, there is vanilla flavour, just once a day will help your body recover.
I have floradix tablets that i take 2 a day because since weight loss surgery i am prone to be anaemic. It has just been a rough year all round for me and i get them every so often,just this year has been particually bad for me. Never mind it will soon be Christmas and i can start getting all my deccies and lights up and all my trees decked out as well.xxx
You will get better and I am always here to chat, I don't feel you're complaining. You are completely understandable and there's certainly no judgement here just unconditional support
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