Hi everyone! Just a quick question as I’m struggling to find a link - if indeed there is one - between these and psa. In the last 3 months my lymph nodes have swollen 15+times! 9 times in my groin - so severely that I can’t walk or lift my leg and the remaining times in my neck - behind my ear! Is it the psa, the Meds or completely unrelated?? Can’t get any sense out of any of the docs - it comes and lasts for 3-4 days then goes! My shoulder also seems to give out around this time so I can’t lift my arms…
In addition I have pain in hips but rheumy says bursitis and that I have the hips of a twenty year old - shame my face tells a different story! Also rheumy says I have tennis elbow - again a new thing! It just seems too weird that I suddenly have all these things but none apparently related to psa. Currently lymph node thing is the most annoying - I’m on mtx and trying to figure out if it’s sort of suppressing my immune system but not enough so that immune system is fighting back?? Probably rubbish. Also have developed two lumps on top of hands - much worse on arthritic hand? Waiting for ultrasound to see if ganglions - again a new thing - no trauma and both came at exactly the same time!
Thanks for any help - just trying to make sense of it all!
On another note - enbrel looks to be ever closer! Waiting for insurance company to ok (or not) - have the welcome pack from enliven, but not letting myself think it’s a sure thing just yet!! Over a year now and don’t really feel like I’ve progressed… Also a bit worried as I’m allergic to literally everything (antibiotics, NSAIDs, steroids, sufa) so stressing about yet another drug …
Merry Xmas to all and thanks in advance for any help
Some years ago one of my Achilles tendons became excruciatingly painful while playing squash. A&E assumed it had snapped but it hadn't. Anyway, that put paid to squash. Next, tennis elbow brought an end to tennis, appropriately enough. And there was lots of other joint stuff over the years, I think most of us have these stories. And now, looking back, I just think 'PsA'.
I had bursitis of the hip earlier in the year, it did improve eventually. My rheumy said something about it not necessarily being due to PsA but I just do not get that. When we have a joint problem and a diagnosis of a condition that targets joints .... well surely the two are very likely to be related.
I think bursitis may just be that bit less serious in some sense or other than other types of joint inflammation because it doesn't seem to worry the doctors too much. The fact that something hurts like hell doesn't necessarily mean it'll compromise those youthful hips of yours! And yes, I thought tennis elbow was classic PsA territory too. I don't understand why rheumys get so cautious about including things in PsA's miserably wide net.
The lymph nodes .... I don't know about those at all. But I do think your doctors should try to give you an explanation to allay any fears. I'd guess it's due to the inflammatory process(?).
I don't think you should fear Enbrel. The impression I'm left with after reading hundreds (thousands?) of PsA-related posts is that people are much, much more likely to have sensitivities to NSAIDs, steroids and DMARDs than to biologics.
Ganglions ..... well if that's what you have, they're fun things in my opinion. Have you heard that people used to hit them with the family bible? A blow with something good and heavy can do the trick. (Oh but please don't go whacking yourself without your doctor's blessing!)
Such familiar stories Golfnut and Sybil, so all I'm going to say is been there, done that, got the t-shirt and wrote the book too! My understanding is that the inflammatory process of PsA can and does affect all the soft tissues around the joints. We know it affects our skin, nails, eyes, intestines, other mucosal areas and heart too. I guess the doctors hedge their bets because there could be other causes of soft tissue inflammations but if they were just to say to us "it's possible or even likely it's your PsA but I can't be certain" we would not feel that our pain and discomfort is being dismissed. And I have to add that the pain from the bursitis in my shoulder was the worst pain I have ever experienced in my life until it was injected/irrigated with depo-medrone steroid.
I've been having a few lymph gland swellings of late too. I think I've had a bit of an infection thing going on but some of the tenderness and swelling doesn't seem to be going, especially around the back of my neck. Unless I'm worried in the meantime I'll hang on to discuss with my rheumy in February. You may like to check back for discussions by mod tntlamb as I'm pretty sure he's posted on lymph nodes/glands and PsA previously.
Never tried hitting my ganglions (I get them in both wrists) with a holy book, traction released the fluid for me the first time and now when they start to come up and ache I find a few days wearing my wrist splints is helpful. My wrist movement is permanently affected but it's only when they become inflammed and start to enlarge that they become visible and hurt.
Hope your Enbrel comes through soon, Golfnut. My bio hasn't made me "good as new" so although I still get aches, pains and problems it has evened out the peaks and troughs enough that I feel I have some life back.
Thank you Sybil and Jules. I know finding an answer to all my little ailments won’t necessarily help but I do like to try to understand things! Rheumy just says none related to psa but I don’t really buy it - didn’t have any of these things before psa then wham - they all just hit! In fact my rheumy is crap - just saw him today and he said oh you need enbrel - last but one visit he said that then last visit he said I didn’t and wouldn’t qualify! Don’t think he takes notes as such or if he does he certainly doesn’t read them!! Luckily the psa clinic is near and they’re going to take over my care so will just freeze rheumy out…
Again thank you for taking time out of your day to share your experiences - crappy for you, but good for me to hear
I think a lot of us want answers! I guess some might feel it doesn't help to know too much, but personally some understanding of what is happening to my body does help me feel more in control, even if there isn't always anything I can do about it.
I definitely give my rheumy a gold star but like I said he didn't make a definite link between hip bursitis and PsA and that did fox me a bit. I find that over time he tends to incorporate these things into the disease though. Am I right in thinking you're off to the Toronto clinic?
Golfnut said:
Thank you Sybil and Jules. I know finding an answer to all my little ailments won't necessarily help but I do like to try to understand things! Rheumy just says none related to psa but I don't really buy it - didn't have any of these things before psa then wham - they all just hit! In fact my rheumy is crap - just saw him today and he said oh you need enbrel - last but one visit he said that then last visit he said I didn't and wouldn't qualify! Don't think he takes notes as such or if he does he certainly doesn't read them!! Luckily the psa clinic is near and they're going to take over my care so will just freeze rheumy out....
Again thank you for taking time out of your day to share your experiences - crappy for you, but good for me to hear
Yep I saw them on 30 November thanks to seenie and will be seeing them in February again. They were sooo good and were willing to take over ongoing care. Worth a 30 minute train journey to get to see somebody who seems interested and competent. Off for flu jab, pneumonia jab and tb skin test now - oh what fun!
It takes nearly an hour by car to see my rheumy and I'd accept a longer journey if necessary. I reckon the one main thing we all need is good doctors and anyway rheumy appointments don't usually come around that often.
Golfnut said:
Yep I saw them on 30 November thanks to seenie and will be seeing them in February again. They were sooo good and were willing to take over ongoing care. Worth a 30 minute train journey to get to see somebody who seems interested and competent. Off for flu jab, pneumonia jab and tb skin test now - oh what fun!
I do about the same as Jules to get to the PsA clinic. And I drive 90 minutes to get to and from the train station. And it is totally worth it for the expertise that is there. To be honest, if I lived in Vancouver, I’d make the pilgrimage to the high temple of PsA once a year!
I am lucky .... my drive to the train station is only 30 minutes :-). The worst bit of the journey for me is arriving on the east side of London and having to cross to the west for the next train. The underground with all it's steps and people is only manageable on my best days otherwise I have to take an incredibly expensive taxi ride ... but hey, ho I'm already doing better since changing to this rheumy.
Golfnut, I’m sorry. I sent your thread OT by turning this into a travel challenge competition. BUT seeing that I did, I concede to Jules: the London Underground leg makes her the hands down winner of the travel contest. I cannot think about doing the tube let alone do it. My hat’s off to you, Jules!
But back to you, Golfnut. It will be interesting for you to ask that question of the real experts. I think I know what their answer will be. Good luck with the Enbrel!
As a fellow hip bursitis sufferer I'm also interested in hearing a different doc's suggestion. My old rheumy (on whom I had professional crush) always said they were related. His take was that the inflammation in and around the hip joint was just enough to inflame the bursa and also to cause the tendon to push into the bursa AND that the inflammation changed the geometry of things enough to have a knock on effect to other joints to which the tendons/muscles of the hips were also attached (so hip can throw of knee, elbow can interfere with shoulder, etc.).
I love that we are all curious enough to want to know what's going on inside. And I think we all also intuitively know when things are/aren't related--even if we don't know the mechanics.
So, Golfnut, keep us posted and good luck in your quest for answers and Enbrel. Wishing you well.
I have chronic bursitis in my right hip from PsA in my sacroiliac joints that puts pressure on my hip joint my rheumy commits to the things that are related to PsA and my ortho concurs I think having another doc back up diagnosis helps. I also get "tennis elbow " in both elbows also this is caused by PsA confirmed by both docs as for swollen lymph nodes I would bet it is caused by the whole inflammatory process of PsA
Interestingly I have been trying to do some research on mtx and swollen lymph nodes, having just suffered another bout - there are some studies that found mtx caused recurrent swollen lymph nodes in about 3% of users which only resolves with cessation of mtx??
I will try to remember to ask some questions about these issues when I go back to specialists at toronto. Given the other members who are suffering similar issues with bursitis and tennis elbow I suspect there is some relation to psa.
With regard to long journeys to see specialists, I’m in awe of you all! I definitely have it easy …
Golfnut, have you read the book(s) written by your very own team of PsA doctors in Toronto? They explain all the extra-articular manifestations of PsA. The link is in Book Reviews.