Feeling very low after another build up of these symptoms which have now got bad enough for me to go to the doc today for Doxycycline abx. These calm down and get rid of the symptoms for a couple of months then they are back. Hard to know if I am getting several viruses (i have had some which definitely were just that in the last 16 months but I feel it is the Rituximab too.) That causes me great concern as it is the only thing that has really worked for me in the last ten years. I had three years of no side effects ... no catahhr type side effects on Rtx since starting in 2014 then end of 2017 until now it has been every few months these chest problems arise.
I have had extensive physical examination (most recently last month when I felt fine and I also saw a respiratory physio who said my lungs were strong and I could do all he breathing tests brilliantly) and spirometry which was all very good and a clear CT chest scan. I don't have breathlessness .. I don't feel wiped out unless I have had coughing attacks at night so I am a bit tired from lack of sleep but that is inevitable, but I hurt due to jolting my joints. I have no problems swallowing but I can be a bit nasally/blocked sinuses (always have been) but when I get these catahh/ chest things I can sometimes bring up rubbery/gluey green mucus pieces, but they are small. They can fly up then not come at all. I am trying to collect something for testing which my doc says will prove if it is caused by an infection. However I am awful at doing this even though I have been shown by the physio.
I am a very hopeful person usually but feel so upset thinking I have to go through a big change again to another med. Not even sure which med is next. (I have had Enbrel and Humira anti TNFs and Sulpha and Leflunomide. Mtx I take 10mgs sub cut also.) The respiratory consultant says no evidence of bronchiectasis on my CT as I thought my symptoms were that, and my lungs look in very good shape so why why why all this horrible cough/wheezecatarrh?! I can cough with it till I reach and then it is still back within minutes. This time it has had a tickle in the throat which I haven't had before. I do not have heartburn or indigestion. I do have food allergies ... soya, shellfish, strawberries, kiwi. melon and latex allegry (Collophony family of allergies) , so not sure if the fact I am sensitive to these makes me sensitive to other allergens in the last couple of years?
I do 2 hydro/pool aqua sessions each week and no fatigue or breathlessness there. Nothing doing housework. Or going upstairs.
So what I am asking is has anyone else had repeated chesty issues with Rtx? Had to come off it? I tried to ask the registrar last two visits at rheumatology clinic but he said he didn't know much about it, so I need to request the consultant next time. My next infusions are due end of September. Were last done March/April.
When there is no catahhr there is no wheeze or cough and after the Doxy I am fine for two months or a bit more, then it comes back.
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NeonkittyUK
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I have always had cats until about five years ago .. just haven't felt the time was right more recently to have another one for non related reasons, but I haven't ever had a cat allergy! I'd rather sit with a mask on and stroke a cat I love them so much! Cathie, I was thinking too rhinitis/allergy, but I don't know if it would make so much productive cough and chest catahhr (which causes the awful wheeze as it tries to move up my windpipe. Once no catahhr then no wheeze. I can take a huge breath in and out no problem if there is no catahhr ... no pain or anything like that and as I said in my post I have been told my lungs are very strong/clear CT.) I mentioned rhinitis/allergy to my doc yesterday but as I had had to go as a walk in patient as no appointments for three weeks and I needed to get Doxycycline, there wasn't time to pursue that. I think I need to say to the respiratory consultant when I see him next that I would like to see if any allergies are causing and contributing to it but can rhinitis cause phlegm so far down in the lungs as the majority is coming from there? A small proportion from my sinuses. Thank you for your reply and hope you are well. x
I really don't know about the phlegm on lungs, but I wouldn't exclude it. I found that getting a steamer - like a vacuum cleaner - really helped. I don't let our cat into the bedroom most of the time. We once had 4 cats which was insane! but lovely
I know it’s perhaps silly but have they checked your immune system is ok ? Maybe low dose of antibiotics to keep you infection free might be a way of counteracting your symptoms. I’m on penicillin every day because of immune system issues and have started on Baricitinib which is my only treatment with added steroids. Most treatments have to be stopped if you need antibiotics but low dose every day to keep infections away are making a difference to me being able to have any treatment for RA at all.
Thank you Leics, I have my immunoglobulin tested before and after my Rituximab infusions which are twice yearly. I have been told they are in the normal range so they haven't been overly depleted with the Rtx. I am allergic to Penicillin, but I am glad your combination of that with Baricitinib is working well for you. I have heard of people taking Azithromycin three times/days a week as a holding antibiotic when they have repeated chest infections/bronchitis etc, so I understand what you are saying re low dose antibiotics.
I get my rtx infusions at the Western General in Edinburgh. They give me an antihistamine and a steroid flush before the rtx. When I queried the steroids (which were increasing my blood sugars) I was told that they helped my immune system. I didn't really understand but thought I'd share that.
Yes I have asked this too with my infusions. Convinced the pre Rtx steroid IV is what made me gain some weight over the number of infusions I have had since 2014 and my nurse said she thought so too.
We have to have the pre Rtx steroid I was told! Given my allergies to many things I will continue with it as I don't want to have a bad reaction to the infusion at the time it is given. That has always gone very smoothly.
Yes. I was concerned because it played havoc with my blood sugar levels - up to the highest level possible a few hours afterwards. The diabetes department advised me to increase my insulin dose as the sugars rose. Its worth knowing about this effect.
I’m allergic to just about every antibiotic except penicillin. Maybe suggest that your GP could try a prophylactic antibiotic for a while to see if it helps. I’ve had to be reduced to 1/4 dose of penicillin recently but so far infection free. The only other thing I could suggest is a good antihistamine prescribed by doc if it is allergic reaction issue. It’s good you have good lung function and although your cough must be really annoying and sometimes worrying hopefully it’s nothing serious and they’re looking after you. If you need to see a GP and can’t get an appointment then time to get stubborn and not take no for an answer.
I am allergic to The Penicllin Family! Aspirin too .. forgot that one. I usually go as a walk in emergency as by the time I need the antibiotics there isn't a an appointment for three weeks, so I have actually become an emergency. The waiting room is chocca mornings as everyone who can't get an appointment for three weeks has to come as a walk in if they can't wait for meds prescribing. I said to my OH I want allergy testing next, given I am food allergic/sensitive to quite a few things and latex allergic. Allergy to Penicillin. I think the private respiratory consultant will have more time to take this up/organise it. He says that we are coming from a good place with strong lungs and clear CT but it is debilitating and demoralising to cough so violently and not be able to clear/stop it. I have seen a respiratory physio too recently. I will pursue this but the consultant said he feels it is a combi of my lowered immunity and catching germs and the Rtx making my lungs produce more phlegm. My doc says we have to firefight the symptoms as and when for now. I have taken three Doxycycline and they have started to have a small but much needed positive affect. Cough less violent and frequent but still catahhr and wheeze. I don't think pollen/hayfever as I get these chest incidences all year round.
Oh just another thought I had hay fever a few years ago which totally blocked my airway I thought I had the flu because although I had no temperature it knocked me for six and put me in bed for a week. I had never suffered with hay fever before but it can cause masses of phlegm breathing problems and be very serious although I wouldn’t have believed it had I not experienced 1st hand. Maybe there’s a pollen or allergy which you have picked up and that is what is causing your symptoms. I found when on rituximab that I developed an egg allergy which I still have I am not able to eat anything containing egg. So don’t be surprised if it’s another random allergy.
Hi Leics, thanks again for replying. So you think Rtx caused that egg allergy? Interesting indeed., Sorry it did though. No, I have never had hayfever. I will remember this for my next respiratory comsultant meeting. Maybe worth me keeping a food diary? See if catahhr worsens after anything. I don't have cow's milk or hardly any wheat as they bloat me, but I am not specifically allergic to those, but given I have soya, shellfish and kiwi/strawberry/melom (except watermelon) allergy, who knows. I am definitely sensitive. May I ask did Rtx cause you allergies or stop working for you?
I’m sorry to say that Rtx knocked out my immune system but the fault for that one lay with a really bad consultant who didn’t monitor me and my immune system will never recover as a result. I used to get a really mucous but dry nose sinus whilst having the infusions too but it cleared after a few days. It did knock me for six though I felt I had been hit by a bus for a week after. They stopped rtx due to immune system and not because it didn’t work but it wasn’t that great for me by the time I felt better I was ready for a new infusion. I’m allergic to aspirin too so 90% of anti inflammatory’s are a no no too. I’ve just had to endure 6 years with no treatment because of crap consultant and rtx I know this is pretty rare but no treatment except painkillers hasn’t done me any favours at all, even GP refused to prescribe anything including steroids. Hey ho I’m hoping the future is bright now I’ve got a new guy who’s really looking after me. I hope you manage to sort out the problem you have because it’s obviously an issue for you and let’s face it this rotten disease is enough to cope with. Sometimes the hay fever I have is also present year round because spores in the winter can affect me too. Egg allergy was definitely as a result of meds but I’m only allergic if I eat it not if I touch it so thank god it’s becoming easier to get vegan foods not that I’ve had to change my diet too much but it’s the little treats I used to miss like a cup of coffee and a piece of cake now and then. Lots of coffee shops do vegan cake so a treat is possible once in a while. 😉
I am so sorry (and feel annoyed indeed) to hear you didn't get proper monitoring. That is disgusting. Glad though you have someone now who is interested. I am going to discuss my sinus and catahhr cough issues next rheumy clinic as I am not sure how long the Doxy abx will keep working for me .. touch wood .. they have so far and I have had about 9 lots now in the last 18 months. As you said I will ask again if my immunoglobulin levels are still within acceptable range and also the possibility of a long term holding dose of a lower antibiotic but not sure I want do do that. They seem very keen to check on the Immunoglobulin at my rheumatology department. I am glad you can have some vegan treats and have cake without eggs. Isn't it strange how the meds affect us with allergies? .. so I will pursue allergy tests. I haven't ever had any side effects during or after infusion except falling asleep with the antihistamine! It has always gone very well. I do feel tired for about a week then a bit wiped out for a while longer but i just accept that will happen. After a month I feel energy returning. I usually have a lot of drive and stamina (and stubbornness!!) despite my RA. I would say I had 3 years of no sinus or chest issues since starting Rtx then end of 2017 it started and has got slowly worse. As I didn't ever get any infections for the first three years of Rtx it seeems odd to me I started to after that time. I did read that they can come on after about 6 cycles of Rtx so that could well add up. Also since end of 2017 I have been out more and susceptible/vulnerable to germs so I accept that. I would say my issues with the chesty catahhr and sinus are 70 per cent Rituximab .. for the sheer fact I take it and it has made my lungs sensitive, and 30 per cent catching germs that everyone would catch. I hardly even used to get a cold? Yup it is annoying as you know. Very, very much so for you when you say Rtx didn't seem to do that much for you. For me it has been the drug that got me moving again after quite a few years of failed Anti TNFs and poor mobility and pain/seizing. I hope you are not in pain and it is steady for you. x
Ah that’s so sweet of you. I am unfortunately still in chronic pain and stiffness is awful I can hardly walk but I think without the low dose steroids I’m currently taking I would be in real trouble atm. I’m the most stubborn person you could meet and I think my pain threshold is awesome lol. Let’s face it we have to be strong to cope with RA. I’m really glad rtx is working for you and really hope it continues and you get your issue sorted. At the moment I’m on a pretty new journey with baricitinib I’m on half a dose but if things go well I’m hoping that it will be increased soon. I have found though that as soon as the steroids are taken away I seem to go straight back to square one. Ever positive I will find a solution and get some mobility back if nothing else. I must say that I’m pretty sure I’m having a flare so I suppose I shouldn’t expect to be pain free or walking very well. But I’m trying not to moan because I might be better in a few days (touch wood). Hey ho just another glitch. Stay well and keep enjoying going out because if you’re not exposed to germs and viruses your immune system will never get a work out.
i understand you Leics as I have been a very stubborn patient in the past with a crazy tolerance to the RA pain thinking it was the right thing to do. I was quite immobile most of 2015 and bedbound and on steroids so appreciate where you are at the mo. I hope you can increase the Baricitinib and get moving again. Never lose hope as I felt I was destined to be hobbling on two sticks for the rest of my life and spending most of my time in bed. Takes time to recover but you do. True what you say about the immunity, but when it causes such a rotten chest infection every other month then you have to wonder what is the answer. I wish I could produce a sputum sample for them to test .. that is important, but i never seem to be able to at the mo. A lady I know was the same (but on different meds) and took months before she gave them sample and they discovered she had a rare type of recurring pneunmonia. She was changed onto more relevant abx. My worry is I cannot take penicillin. Also the main humdinger of an infecftion I got which seemd to make me vulnerable was Christmas 2017 (husband's niece turned up to a family dinner coughing all over me despite me asking sister in law to let me know if anyone had cold/flu and I would stay at home! Nope, she just sat her opposite me at the table. Was too far to come home .. three hours away. I got her bronchitis and it turned into pneumonia. I had a cloudy xray bilaterally and was sent for a CT. Respiratory consultant says he thinks that rendered me so low as I went two months without abx as a temp doc at my practice refused to prescribe them for me! Consultant agrees with my feelings it is partly picking up germs and going out more and partly my lungs are sensitive due to Rtx. Anyway I hope you are soon feeling more mobile and let us know how you are doing. I dont know how soon Baricitinib works? I thought I once read it can be fast worker and I so hope so for you. Thank you, Leics. X
Was really interested to read yours as was recommended rituximab next and sorry it’s made you feel low: this b****y disease does this I find from time to time: usually drugs or side effects bring you down when all seems to be going well. I hope respiratory get to bottom of your chest infections. I’ve got ct scan coming up for breathlessness, they thought maybe asthma? But like you worry about all these being disease or drug related & keep getting conflicting advice e.g. gp thought recent fatty liver was unrelated yet rheum registrar said enzymes in drugs can cause it. I try & read up so much but feel totally uninformed at times 🙄 on plus side had coffee with friend today & they said yes but quality of life today is better than if diagnosed 20 years ago, you cld ve been in wheelchair by now which is true I guess: serenity prayer & all that 😊hope you get sorted soon x
Thanks, Kerensa. Rituximab works superbly for my mobility and stopping RA disease activity and my CRP/inflammation are zero. All good there. No resason to think it will affect you badly in this chesty way. Not at all. What my GP says I need to do is ascertain by sputum sample if this catahhr is bacterial infections or if my lungs get an excess of it due to the fact I take Rituximab. She says I need to speak to the Rheumy and not Registrar as they often say to me .. sorry I don't know .. when I ask about Rtx. I have had a clear CT and very good spirometry results and told my lungs are very good/strong. Also I want allergy testing. I have to investigate quite a bit more before a decision is made re Rtx. I could stop that and still have these catahhr problems. Don't want to jump out of the frying pan into the fire as such! Strange as after the Doxy I am completely fine. I was diagnosed 24 years ago and given Sulpha which was great for 8 years till it lost its efficacy. I was then offered a trial of the first biologic of Enbrel but was too scared to take it, but ten years on ended up taking it! Sadly I couldn't stay on it as it gave me allergies and stopped working after 5 weeks, but it worked the same day for me when I stsrted taking it. I hope you go on alright and your RA is not too trousblesome if you are contemplating RA meds change. X
I think you have answered your own questions mostly Neonkittyuk.
I am actually a respiratory physio! I also have RA.
I have recurrent problems with sinus infections. And occasional chest infections.
I’m on imraldi and MTX.
The fact that the phlegm is green suggests infection. If there is phlegm stuck in your airways it causes a temporary narrowing hence the temporary wheeze. (An inhaler won’t necessarily help with this-clearing phlegm resolves it). I suggest you get a sputum sample done ASAP. You may have an atypical infection that needs a different antibiotic to doxy.
“Steaming” would help with clearing your chest. Drink lots (1-2 litres a day- unless you are on fluid restriction) to keep well hydrated. Do the exercises or techniques your physio has taught you. It’s a very good sign that your CT is clear. Meaning that your symptoms are not caused by any long term changes in your lungs.
If you are going back to see your physio ask about bubble PEP. Here’s a link about it for your info. It’s a largely harmless well tolerated method to aid sputum clearance. bronchiectasis.com.au/resou...
Thank you so much Rooby-Dooby. Most helpful from you. Sorry you have RA and chest infections too. My respiratory physio has bronchiectasis and asthma so understands very well. I have tried to think through everything and I will have a good talk with the rheumy soon about Rtx. Thank you for the info re Bubble PEP. My physio didn't menton that. Now I am on Doxy the sputum is clearing quickly so I bet I cannot get a decent sample, but I have the forms and pots from the respiratory consultant for whenever I can do so.
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