Hi All I really could do with some input. and apologgise foe long post in advance but am at a loss...
I am 57 yrs old and have an extensive med history which i shall try and precis. !980's to present day history prolapsed L3/4/5 and moderate degenerative changes over the yrs. 1983- Lost 12 ft small bowel due to mesenteric infarct. Misdiagnosed as Dr's thought it was IBS because i looked so well! Lots of surgery for adhesional bowel obstructions and removal of gallbladder 2004.
In 2006 diagnosed with hypothyroidism and polymyalgia. commenced on Fentanyl patches and pregabalin for back and bowel pain as i don't absorb tabs very well due to short bowel. Thoracic denervations from T4-T12, and facet joint inj C5/6/7
1009: mini stroke and osteoporosis. 2014: Fibromyalgia ,O/A, Giant Cell Arteritis (GCA) commenced on Methotrexate plus 60 mgs prednisolone which caused 3 stone weight gain. History of falls, unsteady on feet, surgery for torn meniscus and now awaiting total knee replacement when Surgeon knows whats causing increasing breathlessness.
2015: Mod to severe Sleep apnoea on CPAP but don't tolerate mask well.
I see the Rheumy and explain that i think the Methotrexate is increasing my breathlessness but am told that all other disease Modifying Drugs are not without side effects and this is the best for GCA/Temple Arteritis.
2016-17: So over the last 18 months i have had 3 prolonged bouts of pneumonia and my right lung feels like there is a lead weight in the bottom. Up Until my last lot of antibiotics in January 2017 l have been coughing up this vile thick green/yellow sputum but mainly when i do a deep cough. l explain this to the respiratory physician and also my concerns about Methotrexate. He tells me that there is some research that shows that Methotrexate can cause pneumonitis so he decides to carry out a bronchoscopy 6 weeks ago.
Clinical Findings: Acute Inflammatory Process. Brocnchicial Washings show 65% Neutrophils, 20% leucocytes and 15% macrphages. I am seeing Consultant next week but that is because i pushed to have appoint brought forward.
What do these results mean as my quality of life has become so limited and morale so low and yet to look at me i still look well, hence the delayed diagnoses over the years. I am also experiencing severe pains in my lower & upper legs and right buttock, this is accompanied by my toes feeling like ice with numbness and tingling on right side particulary. This is not cramps or sciatica the latter which i've had for over 30 yrs. Then at the weekend my left upper lip started to tingle and it spread to my jaw and up left side of face and down left arm lasting 4 hours then disappeared. Today there is very mild tingling again just on left side of face.
I don't know whether this is related to my breathlessness or i have been worried about MS due to the amount of falls and unsteady walking etc.
I have tried talking to GP and Consultants about this but it gets brushed aside with so many other things going on and because despite all of the above i look extremely well all the time.
I know your are not here to diagnose but i'm in so much discomfort with heaviness in lung so any input would be gratefully received .
I've just received a letter from DVLA to say they are taking my driving licence away due to sleep apnoea.. My Consultant did not send the forms off that the DVLA sent him IN DECEMBER as he wanted to go through it with me in clinic next Monday in clinic.... I feel utter despair as he's seen me twice since xmas and i asked him to sign them then!
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cezzie5
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Hi I am so sorry you are going through all this with your health. I have COPD dx in 2006. It didn't seem to bother me much when first dx with it. It was about 5 years ago when it seemed to get worse being breathless all the time. Only time I wasn't was when I was sitting. Getting infection after infection. Was dx with OA in 2012. Then with psoriatic arthritis and psoriasis in 2015. The first medication I was offered for the PsA and P. Was methotrexate. And I refused it after the consultant told me that one of the side effects could be damage to the lungs. And I didn't want to chance it. With me already having damaged lungs. All I can suggest is that you go back to your GP. It's not right that we have to fight for things. Take care xx
I'm sorry to hear that you're going through a tough time as well. I think the time constraints on DR. consultations make it very difficult for them to deal with multiple problems..However this just leads to fragmented care with no one taking the reigns and looking at you holistically. Losing my driving licence was the final blow as i don't drive far but handy when my dog need to go to the vet etc.
I want to know what has caused my body to fail me so badly in the last few yrs that i get breathless just walking from lounge to kitchen.
3 yrs ago I was walking my dog miles up the beach now i use a mobility scooter just to get him to the sea front.
I really hope things do improve for you and thankyou so much for taking the time to reply xxx
Thank you cezzie5. I hope things improve for you too. Most of my problems have to do with my immune system at the moment but I am seeing a immunologist . And she is doing different tests. I don't drive. Sorry that you have lost your driving licence. My husband used to take me places in his car but he passed away 3 years ago. So I know how you are feeling. I walk every ware or get a taxi or bus. But I do excersise just started a cardio excersise class at my local gym. It was my PR physio that referred me to it. Although I get breathless doing it. It should help my lungs. And also my arthritis. I am 59. Take care xx
I'm hoping to do a Mindfulness course next week which might help me sleep better. Well done for doing physio class anything helps. I try and do Charlie's walk at 7pm but with my knee busted and knee replacement until breathlessness is sorted my mobility has taken a back seat but I try and do my daily stretches. Keep going as you're doing great exercising xx
Hi hope the course helps you. Have you seen the news about the terrorist attack in London. You take your time with exercising due to your knee replacement. Take care
Hi cezzie,, just to add I did a local Mindfulness course but also a future learn Mindfulness and Meditation on line course which was excellent. The next one starts in May but you can register now with futurelearn .
Hi Cezzie5 and Nottobad, sorry to break into your chat but I have had sero negative arthritis (auto immune) for about 25 years and was diagnosed with COPD about ten years ago. I had a bad arthritis flare up about five years ago and was prescribed methotrexate - even though the consultant knew I had COPD. I did not know it could harm the lungs but I didn't take it as the side effects looked scary. At a health food shop I was recommended Celadrin but they said it would take quite a few months to work. I took nothing else and the arthritis had completely gone within three months (including from my fingers which were stiff and swollen). I took the Celadrin for a few more months and then stopped. Luckily the arthritis has not returned. Maybe the arthritis would have cleared up anyway but I think it was the Celadrin (or maybe it was mind over matter!) Hope you both feel better soon xxx
Hi Thank you so much for posting as I have some in my cupboard. A year ago I saw a nutritionist who pave me a long list of things to take and I couldn't remember what was for what so two of the iems I didn't take and that was one of them. I will have a read up on it and will certainly give it a go. I am thrilled that you had such a positive results and long may it continue. All the best x x
Thank you for posting this. And I am pleased it helped you. But as I take a lot of medication for other things. I will check with my gp. Before I take anything. I usually only take things that have been proscribed. By my gp. As everyone is different what helps one may not help another. Take care xx
Hmm I used to think that but the cocktail of potent drugs I've been taking over the 20 years have only served to induce more problems. Im determined to come off as much of my meds as possible. I have to take lots of but and minerals as I have short bowel so one more has got to be worth a go for me esp as nutrionalist hss alreaxt recommended but you are absolutely right to be cautious xxx
Hi that's up to you. But I won't be using them. You are aware that autoimmune disorders are not curable the same with COPD. The medication slows down the progression. I am having my medication reduced at the moment as I have to take a regular antibiotic. I was on sulfasalazine and Leflunomide. My rheumy consultant wants to wean me off the sulfasalazine. I have been taking one twice a day this will be my second week. I used to take 2 twice a day. So when that finishes I will be just taking the Leflunomide. But I am all ready getting a lot of pain and my hands ar getting stiff. So I have a follow up with my GP next week and I will see what he says. Also I am having to take more painkillers than I did befor they reduced my medication. Xxx
It's really fine hard to find that balance of what's right for you full stop and struggling to move what drugs to take as I don't want to be on the Methotrexate anymore and stopped at 3 weeks ago against my rheumys wishes.. like you say the pain comes back with a Vengeance and I struggle to get my steroids under 12.5 milligrams without being able to function to all . If you find anything helps let me know take care xxx
Oh you are so brave. I don't think I could stop taking my medication. I am Begining . to believe that all the medication we are given are a lot worse than the actual conditions we have. We all want to do what is best for us . So if you want to try those tablets you go for it. And hopefully they might help you. If you deside to take them let me know how you get on. Take care. Xxx
Hi Cezzie, you do have a lot of medical problems to bear and it must be really difficult for you, trying to manage them all. From reading posts here, I think it's not uncommon for people with multiple health problems to run into difficulties with trying to coordinate all the different diagnoses, prescriptions etc.
Looking at your list of illnesses and current worries, it would seem likely that the pain and tingling in your extremities are associated with the fibromyalgia. But obviously, the arthritis could be causing some of the pain too. You're obviously worried about the tingling and unsteady gait being related to MS, so blood tests and seeing a neurologist, should be a priority.,
As regards your lungs, it sounds like you have an ongoing chest infection. Have you sent in samples of the gunk you're coughing up ? If not, you should as it's how doctors find out which antibiotic is best suited to whatever bug you may have. Before you see the respiratory consultant next week, write down all the questions you want to ask him and insist on a clear explanation of the findings on your CT scan.
Are any of your doctors prepared to take on the role of your primary caregiver ? I only know this phrase from hearing my consultant use it when I suggested that I see other doctors about a seperate issue. He said that as my primary caregiver, he should be involved in all referrals, results etc. I'm not sure if that's necessarily always a good thing but it probably helps to have one central doctor/consultant that all the others can report back to.
I hope you get some answers next week and that things might get a little easier then they are right now.
Thank you for your reply. I will definitely have a list of questions and I'm bringing my best friend with me as she's more vocal than me. I always appear very in control and calm which isn't helpful when I'm trying to say that I'm feeling distressed.. St Mark's bowel hospital Harrow used to be my primary caregiver since 1984 but since I've moved from London to Dorset in 2012 it's hard finding anyone who has had the time to get to grips with my history. I have a lovely GP but unfortunately she's only there one day a week and I wouldn't go to anyone else apart from the fact that the other partners books are full. My chest is ok now after 6 weeks of antibiotics but the pain in my lungs still exists which may be due to the inflammatory process. Interestingly I wasn't supposed to be followed up till May but I pushed for the earlier appointment to get my DVLA form signed then next day received a copy of my letter with bronchoscopy results. I had a private GP where I used to live whose knowledge was amazing and he typed a letter "to whom it may concern" with my history in. However many probs have happened in last 2 yrs and I haven't found anyone willing to do this. X
So sorry to hear that I also have copd and emphesima and angina which is now getting worse doctors prescribed nebuliser ventolin highest dose plus he has increased my carbostein. To get rid of all the junk on my chest I am also disabled with osteoporosis so I feel unwanted sometimes but hoping you are feeling better soon
You have got a lot going on to. You may find some local support groups helpful and that can inc absolutely anything from painting, sewing or local online support networks. I was very isolated and my mood and morale went to an all time low when i moved 5 yrs ago. In the end i plucked up courage and just googled local online groups and then as i got to know people we arranged to meet up. it may help you feel wanted again as your experiences and mechanisms to cope will be invaluable in helping others. I hope things improve for you to. xx
Hello I'm sorry to hear u r going thru so much. I feel like this is me all over so may different problems an surgery an nxow Im having breathing problems N pain all round my rite lung the reason 4 my reply is that u said ud been taking Pregabelin to I noticed thinking back my weezing at nite started shortly after I started taking these I'm still on them now 150mg 4 times And day. Do u think tete could b a link. Xx
I take pregabalin 100 mgs 3 x a day and i have been ok so far, however there has been some very damning research in America about the long term side effects of Pregabalin and Gabapentin. The drug companies have spent billions trying to stop this research being published. I wish i knew how to locate that article. So in answer to your question i think many of the drugs we have to take can cause numerous side effects. I have been saying to Rheumy Cons for over 2 yrs that i thought the Methotrexate for arthritis is the cause for my increasing breathlessness and pain in my lower lung but she said no. It was only when i saw the Respiratory Cons that he said it was well documented re the link between Methotrexate and inflammation / damage to the lining of the lung. I have got to the stage where i just want to come off as many drugs as posss. I would talk to your Dr, re your concerns. Take care xx
I agree I'm in constant pain an have seen ere anxiety but I am wanting to Cum off all meds they have made me miserable changed the way I look totally changed my life. An now respiratory problem. I am so down with it all I change GP Monday so I will go thru it all with them. X
I've gained 3 stone on high dose steroids I know what you mean about the change in Body Image it's the pits. like you I don't recognise myself anymore and would say that's been the worst side effect of all the drugs and treatments. Xx
Awwwww bless you I really do understand. My medication 4 bipolar has this exact side effect. I have gained a lot of weight since starting back on them a tear ago I stopped taking them 2dsy as I just can't cope with how hungry they make me I eat till I want to throw up but wen I don't take them I gave no appetite whatsoever so I am going back to my pycatrist this week I refuse to take these ones anymore an weight gain has coincided with my respiratory issues so it makes sense to stop taking them. My mum gained 9 stone years ago on high doses of steriods 4 temporal arthritis in it was painful to watch her go thru so much mentally cause of steriods. I wish u well xxxx
That's what I take the steroids for temple arteritis, although I am coming down on them after3 yrs.. Funny though if I had a pound for everyone who thinks it's the templend ARTHRITIS INSTEAD OF ARTERIES I would be wealthy lol. I bet your mum found that. I wish you healthier times and good luck xxx
Oh wow really. It's a Terrible condition to live with u have my sympathy. But yes my mum suffered Terrible 4 a good few years. Il never 4get it was 20 years ago now cause I was pregnant t on my first child. My poor mum went thru he'll an back an the steriods had awful egrets a u r aware. But she got better an came off the steriods lost all the Wright in a year all, 9 Stones. She is now 72 an has more energy than I do at 39.i wish u well an if there's anything I can do information wise plz ask. Only thing my mum was left with was waking bone density but this improved o er time am also she had an Ellerton reaction to on to certain medications. She had an anafalatic shock she has yearly checks now an avoids certain meds b t is strong as an ox.i wish the same 4 u. Xxx
No worries about the typo errors I do that all the time on predictive. Im glad your mum is on the mend. Unfortunately I saw respiratory consultant today and it looks like Methotrexate has caused these lymphocytes in my right lung so very breathless ATM it never ends but we have to keep smiling through. I really hope all goes well with you gentle hugs xx
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